On October 1, 2004 a team of twenty cyclists led by six time Tour de France champion Lance Armstrong, will depart Los Angeles California and cycle across country to Washington DC, in the Bristol-Myers Squibb Tour of Hope. These amazing twenty were selected from over 1,200 applicants to raise awareness and share their passion for cancer therapy and cancer clinical trials. All of these men and women have intimate stories to share about how cancer has affected them personally. Each one of these cyclists has had to overcome this disease in one way or another.
Once such cyclist is a truly an exceptional man, Darren Mullen. Not only does he hold one of the most dangerous jobs there is – a US firefighter, but he also helped his wife fight breast cancer; a battle that she ultimately lost. He is now raising their seven-year old daughter and is riding in the Tour of Hope for both of them. "In memory of Deb and for Rebecca's future" he said. I had the privilege of speaking with Darren about his experiences.
OncoLink: Thank you for agreeing to speak with me. Most of our readers are patients looking for information and help in making very difficult decisions in their lives. I wanted to interview you in the hope that you might encourage and motivate some of our readers who may be going through a similar experience. Could you tell me a bit about your wife and how she was diagnosed and what she went through?
DM: Deb and I met in college. We dated for four years until she finally talked me into getting married. I distinctly remember, it was the night of September 11, 2001. We were watching this nightmare unfold on the TV and stayed up late talking about it. It was 1:30am and Deb finally told me that she found a lump in her left breast in the shower that day. She was not looking for it, she just happened to feel it in the shower. Because of the events of the day, she did not want to tell me earlier.
I went to work the next day, totally overwhelmed with everything. Not only were we going through this in the country, you know, I am a fireman, but my own wife found this lump. I should mention that Deb's mom died of breast cancer when Deb was only 7 years old.
Deb called me and told me she made an appointment with the doctor. She had been getting yearly mammograms from her early 20's because of her family history. The last mammogram was Jan 2001 and it was totally fine. At any rate, by September 29, 2001 we knew that it was a 5 cm – walnut sized – infiltrating ductal cell carcinoma of the left breast. Deb did some digging and found out that her mom had died of the exact same type of cancer, in the same breast, at the age of 37 back in 1974.
Within three weeks she had a mastectomy on the left with a lymph node dissection. Only one lymph node had what they called microscopic involvement. Given her family history, we decided that Deb should get a simple mastectomy on the right as a prophylactic measure. Then she started the chemotherapy. She was immediately enrolled in a clinical trial. She received Adriamycin, Cytoxan, and Taxotere. The arm that she was randomized to was to receive all this chemotherapy that would ordinarily take six months, into a three-month treatment course.
It was so hard on her, but she never complained. The therapy was very intense, she was extremely tired, nauseated, and achy. They gave her GCSF shots to boost her white blood cells and they gave her lots of bone pain. Deb was always upbeat and optimistic through all of this. I was the only who thought why do we need a clinical trial? If something is really better it would be the standard therapy. But Deb believed in it and was the model patient. In fact, her doctors would send the newly diagnosed women to talk with Deb for support and encouragement.
Everything was fine for about 6 months or so. She looked great and had even gone back to work. Until October 2, 2002 when Deb was visiting a friend she made at the cancer center while the friend was getting her treatment, Deb noticed a lump under her left clavicle. She asked the nurse what this may be. The nurse made her an appointment with the doctor the next day. Sure enough, it was cancer.
Even with this devastating news Deb was upbeat. She began weekly chemotherapy and daily radiation. In February 2003, Deb was due for restaging. Although, her lump under her clavicle was gone, her disease had spread to her chest wall and abdomen. The local doctors here in Wichita said that there was nothing more we could do to "buy you some time". This was the first time we had heard or thought of "time". They said that things were not looking good. Deb did not take this as an option and announced that we are going to Houston to see what MD Anderson may offer. When the doctors tried to tell us that they think MD Anderson docs will say pretty much the same as what they were saying, Deb just said "I'm going to Houston and I am taking my chart with me".
At MD Anderson she enrolled in another clinical trial where she got a study drug that we knew by number only. She lived in a small rented apartment from March to July 2003. We kept Rebecca in school here in Wichita and I flew down as much as I could. Various family members would come and stay with her. She really needed to be there as she was getting weekly therapy. As I look back at that time, some of the greatest moments Deb and I had, were just being together in Texas. We spent a day in Galveston and just enjoyed and treasured being together.
At first the study medication was working but the second restaging CAT scans came in July 2003 and they showed that the disease had spread. We wanted to go on another trial but the rules were such that you had to be off any other study for a certain period of time before beginning another trial. So we returned home.
At home Deb was placed on a drug called Capecitabinebut I could tell that things were not going well. She would complain of dizzy spells and say odd things that were out of context. When I mentioned this to her doctors they immediately ordered a CAT scan of the head which confirmed our worst fear. By the end of July 2003, Deb had developed metastasis to her brain.
At this point our doctor told us that it was time to get hospice involved. We did home hospice for a while but then, Deb's pain was too difficult to control so for the last 2 weeks of her life she was in an in-patient hospice facility. Deb passed away Aug 31, 2003.
OncoLink: How much of this did your daughter understand and how did it affect family dynamics?
DM: Rebecca understood much more than I gave her credit for. She was only 4 when all this began. We informed her as much as we could given how young she was. She was so good about getting shuttled back and forth from and to the two grandmothers and aunts and cousins.
In the beginning, she would go with Deb to her treatments and sit on her lap. She wanted to help the nurses flush her port. She lifted Deb's spirits. I remember when we got the news that Deb had brain mets, I sat down with Rebecca and told her that Mommy may not be OK anymore. She said "No, Mommy will be OK." I thought, oh boy, she really does not get it. Then Rebecca said "If Mommy's cancer goes away then she will be OK and if Mommy goes to heaven then she'll be OK too". And I thought, OK, when I need to talk to someone I'll just talk to my daughter.
OncoLink: Before this happened did you ever even think of cancer? Had you known anyone affected by the disease or was it always something you hear about but does not happen to you?
DM: Unfortunately, yes. My grandfather died of melanoma in 1970. My father died of liver cancer in 1990. My mom remarried in 1998 and three months after their wedding her new husband died of kidney cancer. And, of course, Deb's mom.
Honestly, I expected something to happen to me and no t Deb. Given my family history and my job, I thought for sure something would happen to me. After all, Deb was being followed with yearly mammograms. She was being vigilant and careful with her follow up.
OncoLink: Why do you think you were chosen for this Tour of Hope over the other 1,200 applicants? I am sure their stories were also as heart wrenching and their struggle as difficult?
DM: Good question. When I met my teammates, I was blown away with what these people went through and how they survived and thrived afterwards. It is really an amazing group of people. I guess I am just lucky to be chosen to be among these individuals. You know, my story is not particularly uplifting or happy. And, certainly, there are other cyclists much better than me. I don't know why they chose me but I am excited and glad to be part of this team. In fact, I'll be sad on October 9 th when it's all over.
OncoLink: What does this Tour mean to you? What do you hope to accomplish?
DM: Personally, I want to continue Deb's fight. She was always so positive and upbeat, I need to carry this on to other people. Deb would calm and support all the other patients in the treatment facility. Even the day after we got the news at MD Anderson that the study drug was no longer effective and that the disease has spread, Deb talked to a lymphoma patient for about four hours reassuring her that things will work out. I want to carry on her fight. And I want to fight for my daughter. Given Rebecca's family history she may be faced with this disease in the future. I am riding in Deb's memory and for Rebecca's future.
If I can help one person out there realize that as bad as things get there is always hope and some good can come out of the most miserable situations then I have done what I have set out to do.
OncoLink: Not all of us are able to bike across the county, what should we as good neighbors and citizens be doing to raise awareness?
DM: Best thing is to know your risk factors and be prepared for whatever life has in store. No one really expects it to happen to them, but you need to be prepared for anything.
Plus, people need to understand the value of clinical trials. Without clinical trials new therapies and drugs would never get out of the laboratory. I was educated through this entire ordeal. As I said, at first I was skeptical about clinical trials, and why should my wife undergo experimental therapy, I want her to have the best and the best must be known. I learned that clinical trials are the way to future therapy; either better treatments or less toxic therapies. I need there to be a cure for breast cancer if Rebecca should ever get it in the future.
OncoLink: What should the medical community be doing in order reach more people?
DM: Trial drugs need to be more available. What do I know, I am only a fireman, but some people may not be able to afford to go to Houston for treatment.
Insurance is a big issue too. Our insurance, although they did pay for what they were supposed to, did not do so willingly and we had to fight each step of the way. Pretty much as soon as we landed in Houston they said that they wouldn't pay for anything. While all this is going on the last thing you want to do is deal with your insurance carrier.
I guess medical professionals need to help newly diagnosed patients know that clinical trials exist, what they are, and how they can be beneficial to the patient.
OncoLink: What has your experience taught you? How have you changed through this?
DM: I appreciate every day more. I appreciate watching my daughter. Work is less important to me now. Work is now something I do to allow me to do the things that are really more important. I love sitting on the porch with my daughter and just laughing over nothing.
Our time is not guaranteed. We can not control the quantity of our lives but we can sure control the quality so we must make every day special.
OncoLink: How will you remember your wife to your daughter? How would you like the world to remember her?
DM: Deb was my best friend, my wife. She was not perfect, none of us are, but she was perfect for me. She worked in an eye doctors' office but she made her living by being a mom. She loved Rebecca more than anything and was terrified to have her grow up with out a mom as she did herself. She wanted Rebecca to laugh and enjoy life. I want and need Rebecca to know that – always.