As you get older you begin to characterize yourself by your varied titles; mommy, wife, daughter, career person, but you don’t think at age 25 you will be a Cancer Survivor. The definition of Survivor changed shape for me over time. When I first heard the term when I was diagnosed in 2003 at 25, I thought, how can I be a survivor if I just got diagnosed? Then I learned through the adventure that unfolded over the next year, you must adopt the survival instinct as soon as you can so you can not only survive your treatment but own your health and well being. Surviving is a state of mind. It gave me a sense of power over my illness and the will to overcome all obstacles. Very often I had to dig deep to find that mentality and keep it going and sometimes just keeping it going from moment to moment was all I could do. I also think it is really important to realize that those who love you are also instantly survivors – their life will be forever altered by this experience. Overtime ‘Survivor’ continues to give me power, a reason to live in the moment and be grateful for all my blessings including a wonderful family and friends.
I was diagnosed in February, 2003. I was recently engaged, planning our June ‘03 wedding but feeling quite sick. I had significant trouble breathing for a period of time but thought I was suffering from asthma. A week before I was diagnosed, a golf ball size lymph node emerged on my collarbone. I went to the doctor and distinctly remember him taking a step back and I knew this wasn’t going to be mono as we all hoped. Things moved very quickly from there. I was diagnosed with stage 2 Hodgkin’s Lymphoma with a 15 cm mass in my chest which actually completely compressed my left lung – you couldn’t even see it on the x-ray. The doctors had no idea how I was walking around. They said for the cancer to be this size, it would have started 2-3 years before-Hodgkin’s is a slow growing disease. I had to begin the 6 month regimen of chemo right away. The doctor said I most likely wouldn’t want to get married in June because I would be well underway with chemo and wouldn’t have the energy. My wonderful fiancé and I decided to get married right away, 4 days before I would start treatment and 3 weeks from diagnosis. My mom planned a wonderful impromptu wedding that we shared with much love and happiness and we planned to follow my treatment with a “celebration,” the larger party where we would renew our vows. My husband spent his already planned bachelor party night watching Pretty Woman with my mom and I. Need I say more about him…
We were married March 1, 2003 and I started treatment March 5, 2003. The first several months went as well as could be expected but just as we thought we were entering the home stretch (last 2 months), the CT scan revealed the Hodgkin’s began growing again, which is called Refractory disease. This was obviously a completely shocking and extremely unwelcome turn of events. Now I wouldn’t follow the chemo directly with 6 weeks of daily radiation, I would have to have an autologous stem cell transplant. My husband and I made the decision that I would move in with my parents and he would come visit during the week and stay Friday-Sunday so my parents could take me back and forth to Yale hospital for treatment which was a daily event. The transplant didn’t go as easily as we all hoped. After the initial 3 rounds of high dose chemotherapy, I was retested and the PET scan showed that the cancer did not shrink. I then did several rounds of other chemo agents to try to get the cancer into remission. I ended up having an allergic reaction to a chemo agent which landed me in the ICU. But ultimately the chemo worked and on Dec 10, 2003 after 10 months of heavy duty chemo, I was in remission! I then had a mini and full stem cell transplant and ended up in the hospital for a while due to side effects. After the transplant, I had 5 weeks of daily radiation and on March 2nd, a full calendar year after our wedding, we returned home and entered the next phase of survivorhood.
People frequently ask me how having cancer as a young adult changed my life. I was a family oriented person before and continue to cherish time spent with my family and friends. I was an optimistic, happy person before cancer and continue to be now. That time for me was special – I learned a lot about the people in my life and also about how much a relative stranger’s concern means. One of the most valuable lessons I learned is that having a positive attitude and dark humor can help in any situation. I believe it is imperative to find an oncologist and nurse who have the survivor mentality. They are in this with you and are part of your team. Surviving is a team sport.
When you are young and face something like this, it will most certainly affect your outlook on life. Since that time, I don’t make long term plans. I really live in the moment and try to enjoy whatever I’m doing. Our miracle child is the light of our lives and provides us with a daily reminder of how precious life is and how important continuous investment in medicine and other scientific advances is.