I love the term “survivor.” It means so much to me because I am so grateful to be alive. Being diagnosed with inflammatory breast cancer (IBC) at age 32 was certainly a shock. I’d never known any one of my peers to receive such a diagnosis. I knew people whose moms had breast cancer, but being diagnosed at 32 was unheard of in my world. Once I crossed that invisible plane into the “breast cancer world,” I realized my situation was pretty common. There are many other young women with breast cancer. Once you have the disease, if you are open to it, you are welcomed into a new world full of strong and courageous people who have been through it before you.
One morning in February 2003, I noticed unusual symptoms in my breast. It was swollen and very painful. I went to see my OBGYN to ask his opinion. He felt the swelling was tied to the new birth control pill I had just begun a month earlier and tried to send me on my way. I pushed for a mammogram and he refused and insulted my intelligence for asking for one. He did me a favor, he made me mad. By the grace of God, I saw another doctor the next week. This doctor thought I had an infection and gave me Cipro, but was I was leaving the office he said…. “If it’s not better in a week, come in for a biopsy, there is a small chance it could be inflammatory breast cancer.”
A week went by and I was worse. The words “inflammatory breast cancer” were in the back of my mind and more importantly in the back of my family’s mind and they pushed me to go to M. D. Anderson Cancer Center for an exam. I did, and there I found out that I not only had inflammatory breast cancer, but it also had spread to the lymph nodes in my axilla and superclavicle area. I sat there with my husband and my mom, just shaking my head in disbelief.
I immediately started six months of chemotherapy, followed by a double mastectomy (my choice) and twice daily radiation for six weeks. It was a brutal year to say the least. It took a good couple of years to come out of that fog and I continued to be followed to take the anti-estrogen drug, Tamoxifen. I drew strength from my faith in God, from the incredible support of my husband and parents, the kindness of other survivors who shared their stories with me, and from the brilliant, dedicated doctors and staff at M. D. Anderson. I am forever grateful for the fact I had so many places to draw strength from.
My daughter was only two years old when I was diagnosed and that is why, for me, the worst thing about having breast cancer at a young age is the implication that I could die young and not have the chance to raise my child. That has been and forever will be the single thing I am most grateful for…that I am here to raise my daughter. Because I know with a 100% certainty that no one on the earth could possibly love her as much as I do, I think she deserves to feel that love for as long as possible.
Because my daughter was so young, in my heart and mind I felt that my dying was not an option. I say that as emphatically as I possible can, knowing that somewhere deep inside I realize that life is not fair and just because you are emphatic doesn’t make it so. I’ve certainly lost many friends to this disease who felt the same way. Nevertheless, I told myself on a daily basis that I would survive. When you combine that with the top treatment in the world, it worked for me. I also wrote in a journal each day that I would survive and that I was beating cancer. Never before and never since have I been so diligent about anything.
During many doctors’ appointments and support group meetings I met some really wonderful women. Most of them were at least 10-15 years my senior, many of them were 20 and 30 years my senior. All of them impressed me and many of them became like mentors to me and people I look up to and aspire to be like. I learned a lot of lessons being the young one of the group, but the one area we never had in common was the “kid factor.” All of their children were grown, had been given a solid foundation and were starting their own lives.
Slowly but surely, I started to meet other young women through young survivor organizations like the Young Survival Coalition and The Beth Sanders Moore Young Breast Cancer Survivors’ Program at M. D. Anderson. This was a huge boost for me. Other young women, some even younger than me could meet and discuss our feelings and our fears. When I was amongst these ladies, our main topics were the problems we were having with hormones, children, or lack of children. Some in the groups had advanced to menopause far too early due to chemotherapy. Some had been advised to induce menopause with surgery and others worried about fertility issues. I always wanted to have more children so my cancer diagnosis was a blow to me on a number of levels; but, I remain grateful I have my daughter. I have such empathy for my friends who were diagnosed before they had their first child, making starting a family for them suddenly a major life decision involving risk assessments, doctors, tests and worry.
Over the last few years, I have not been as active in the young survivors’ groups. I have many excuses for this, but I know deep down that I wasn’t sure how many more deaths I could handle. Our group has lost way too many women, all younger than age 40….a 23-year-old newlywed, a 27-year-old with a 2-year-old child, a 34-year-old with a 4-year-old child, a 38-year-old who fought for five years and was never able to start a family. I could go on and on with these horror stories. It’s just heartbreaking to see those husbands at the funerals holding little children they have to raise alone. It’s just not right.
I am encouraged to speak to survivors and especially to IBC survivors because I know that it matters. Meeting survivors was invaluable to me, my morale and to the morale of my family. I see the work that my friends and mentors continue to do no matter how many times their heart breaks from losing a friend, and that reminds me that I need to be tough and keep on meeting new “members of the club.” I have been fortunate to be completely cancer free for seven years now; I feel that I am cured. I continue on Tamoxifen.
My marriage was profoundly affected by my diagnosis. My husband and I can now laugh about the “in sickness and in health” part of our vows, because neither of us really believed we’d live up to those words until we were in our late 80’s. All in all, we both feel we are stronger and more in love although sometimes we feel we were both hit by a bus. My husband had it harder than me in many ways because he had to go through the treatment without the benefit of all the mind-altering drugs I was on. He’s a true gem of a man.
I found many things to be positives about having breast cancer so young. Mainly, I feel that the treatment wasn’t as hard for me, that my body could “take it” better than an older person might have. And of course, there is always that perspective that one gains when facing a life threatening illness.
My immediate friends are not survivors. I like it that the people I see daily are not survivors because I know on some level that they have no idea what I went through, and I think I like that. If they knew, I think they’d treat me differently and I feel different enough already. In addition, everyone has their own problems that shape their life. Mine just happened to be a little more intense than some. Surviving is in a weird way “challenging.” On the one hand, I am so lucky, on the other, the laundry lists of things I have to worry about and deal with sometimes consume me.
Being diagnosed with cancer at a young age can be seen as an opportunity because so many of the great experiences of my life have been due to having breast cancer. It’s shaped me into being a better person. Getting to know doctors as friends and getting involved in government, fundraising and advocacy training has been very fulfilling for me. On a number of levels this has all been a blessing for me and my family, but I have not yet reached the point where I can say “I wouldn’t trade it.” If you ask me when I am age 80, I will certainly say that I wouldn’t trade it, but that’s too much of a gamble now. I want to live a long, long life.
I’ve focused my attention on educating the public and the medical community about inflammatory breast cancer. I co-founded a small non-profit called EraseIBC lead by the most dedicated IBC researcher/clinician in the world, Dr. Massimo Cristofanilli and the most dedicated advocate in the world, Mrs. Patti Bradfield, who lost her daughter, Tina, to the disease, yet continues to fight to help others. These people inspire me daily. I continue to count my blessings.
My name is Jenee Jongebloed Bobbora and I am a seven-year survivor of inflammatory breast cancer.
Category: Faces of Cancer