Survivor Spotlight: Elizabeth Cluff

Regardless of what life throws her way, Elizabeth Cluff has remained resilient, resourceful and ready for the challenge. We had the opportunity to talk with her recently about not only her breast cancer diagnosis, but also her life before and after breast cancer. We know her story will strike a common chord with many of you.

Amoena: Tell us a little bit about your life before breast cancer

Elizabeth: I actually got my degree in social work, and was working with at risk kids who were on the verge of dropping out of high school. I was passionate about getting kids to graduate.

In my personal life, I’d been dealing with infertility for several years. It took me eight years to conceive (and several failed attempts), but I finally was able to start my family. My oldest son, Ethen, is now 13 and my second son, Drake, is 10. They are my two in vitro babies. Then I became pregnant with Maya which was a complete (and most welcomed) surprise. Maya was born with skeletal dysplasia (shortening of the bones), so we’ve had some huge challenges as a result.

Amoena: At what point did you discover you had breast cancer?

Elizabeth: After Maya was born, we had so many things we had to make decisions on. Life was pretty hectic. I was managing to run, which helped me deal with the stress and stay healthy. Every time I would put on a sports bra I would feel a pressure on the right side. I couldn’t feel a lump or anything, just pressure, so I was ignoring it and just trying to take care of Maya and myself emotionally.

I kept thinking I needed to go see the doctor because of the odd sensation, so I took that step. He examined me and said it’s very fibrous and you are 36 years old, so let’s see if we can get you approved for a mammogram. We got the approval and he said, "When you get a moment, go." He was nonchalant about it, so I wasn’t overly concerned. I was in my car one day and I just had this thought pop into my head that I should go to the center that day. Something just told me to go. I walked in and three days later I heard those words: Elizabeth, you have cancer.

I was like, well, wait a minute! I have Maya and we are trying to figure out the right time for her to have surgery. The doc said, "You have to take care of yourself first. You have to survive so you can take care of her." I had to decide, okay Maya you aren’t walking yet, but momma needs to get better, and then we will have to figure out what to do for you.

Amoena: What course of action did you take?

Elizabeth: Because it was all over the breast they [the doctors] thought I needed a mastectomy. I chose to just have one because I thought this was the right thing for me. I said to myself, don’t second guess. I got two opinions and they were both okay with taking one breast. At the same time I began reconstruction and I did the expander.

I had 12 positive lymph nodes so I did chemo (Taxotere) and radiation. I completed my treatment six years ago. Many times, I’ve wondered if there was a link between my attempts at in vitro fertilization and the breast cancer, but I suppose I will never know for sure. And, like most women, now that I’ve had it, breast cancer is always in the back of my mind. I just try to make sure I see my doctors and have any tests that are necessary so I am being as safe as possible.

Amoena: Your life was hectic before your diagnosis. What sort of support system did you have while dealing with breast cancer?

Elizabeth: When I was diagnosed I had a circle of friends who literally stepped in and created a calendar of who/what/and when for me. They did everything including providing rides to school, meals and care for my three children. At that time they were ages two, four, and six. My support system took all the thinking out of the picture, which allowed me to do the daily things I needed with doctors, etc.

It also allowed my husband Mitch, who is self-employed as a landscape architect, to continue to work and provide for us during the crash of the economy. Because I had so many setbacks (10 surgeries due to infection, as well as hyperbaric therapy to heal the huge burns caused by radiation), I believe he was in "survivor mode" along with me. He never questioned "why her" or "why us," he just kept going everyday, trying to be positive for me.

Around my fourth chemo treatment, Mitch was in a serious accident that required surgery (his tibia was shattered). If he didn't have the proper care and corrective surgery he was going to lose his leg. So to be honest, I think both of us were "numb" at this point we knew we just had to keep plugging along and not stop. We had no choice but for both of us to recover.  Because he could not walk or drive, I had to step up and do as much as I could at that point. Again, I was SO thankful for my circle of friends. I will say this made him completely compassionate for those who are sick and can’t help themselves.

And before you think we are all saints, just let me say, we just had to get better for all of us. I’m not going to lie, our relationship was stressful. But we eventually were able to find peace in this journey and feel we are both stronger individuals for going through this together.

Amoena: What would you ask other survivors to do?

Elizabeth: I feel there is not enough of real life information given to women. I say reach out to survivors, even if it’s through someone’s personal blog. Only survivors know the road ahead. This is not only a support system, it’s a safe place for those going through a similar journey.

I have spoken to women lots of times. I've been told that the information shared by survivors or people going through treatment is 10 times more helpful than information given from a doctor or in a pamphlet. I understand a doctor isn't in their shoes and so much information is missed because they see too many patients. This is where reaching out to those who have gone through a similar experience will help.

Amoena: How long after your recovery did you start working again?

Elizabeth: I worked throughout my treatment on a part-time basis, working with at risk students.

Amoena: You have also been working for the Breast Cancer Society, and they've received quite a bit of negative press lately. First, can you explain a bit about your role with them and why you are still committed to being involved?

Elizabeth: The BCS had a program in place where women across the U.S. could receive bras, prosthetics and wigs, as well as other post-surgical items. In my work with this organization, several women I helped were single moms and had very little income to get the necessary items after mastectomy surgery, reconstruction or treatment.

I was able to step in and find the necessary items for each unique situation. The neat thing about this program was patients could call me directly and I would spend as much time as they needed talking so they could express their concerns and fears. I was able to validate their feelings and that is worth more than any money in the world. Validating their concerns with understanding. The other beautiful thing was these requested items were delivered to their doorsteps! This kept them from having the added stress of having to go somewhere and find these costly items.

I just want to say I know that what I've been doing for women nationwide has been the right thing! Despite the controversy, I know the truth of how the programs have been truly taking care of breast cancer patients. I am saddened that the good never gets told. In the end the only ones that get hurt are those in need. What happens is they end up having nowhere else to turn and getting the resources they need becomes practically impossible.

Amoena: What does the future hold for you?

Elizabeth: I hope to continue to help to women all over the United States as I have done, and am doing now. My goal is to provide bras, prosthesis and post-surgical items to every woman in need. I would also like to help breast cancer survivors in other countries who would never be able to have post-surgical bras or prosthetics due to availability and money. I want to ease the burden of this and allow them to heal without stress.