Five Year Anniversary, NED

[Mary H2]

Although I have been reading this board almost since it was created, I don't very often post. I'm posting today because I made a promise to myself that if I was fortunate to survive this disease, I would try to offer inspiration to others. I vividly remember scouring the internet looking for "positive" stories when I was first diagnosed. I remember not being able to find any long term survival stories from Her2+ women. And it scared the $#*^ out of me.

I was diagnosed five years ago at the age of 42. I had a 15 month old baby, and found the lump when I was weaning her. My other children were 11 and 14. I had a left MRM, and they discovered one positive lymph node. I was Er/Pr-, but they didn't test for Her2 status back then. My surgeon just knew that my cancer was very aggressive, and wasn't overly optimistic about my future. When she gave me the bad news I remember asking her if I would live. "I hope so" is all she offered. Fortunately, the oncologist she referred me to had recently received information about the national adjuvant clinical trial. He didn't know if I was her2+ or not, but when I told him I'd be willing to try it if I was, he had my tumor retested. Then I went home and read the details about the clinical trial (including the reality that I only had a 50/50 chance of getting herceptin) and I really started to freak. I somehow knew that I had to get this drug, and began a frantic search to figure out how I could do that if I didn't get randomized. After a trip to a major cancer center and phone calls to research hospitals 300 miles who were also beginning adjuvant clinical trials, my husband and I decided that we would mortgage everything we had to get to 50K+ per year it would cost if I could somehow get herceptin off-label if I ended up not being randomized to herceptin in any of the trials.

And then I got the phone call from my lonc telling me I had been randomized to herceptin in the local trial. I could tell from his voice that he was as happy as I was. And the rest, as they say, is history.

My trial consisted of A/C x 4, taxol + herceptin x 4, and herceptin weekly for another 48 weeks. I remember crying the week of my last herceptin treatment, because it had become my safety net and back then we didn't even know if it was going to prove effective. I didn't know how to handle the uncertainty of the future. But then someone gave me some of the best advise I ever got in my life: fill your life with passion, find what it is that you really love and just do that. Don't fill your life with fear. I tried a few different things, prayed a lot for inspiration, and finally realized that my goal in life is to help suffering children. I already had a Master's Degree in early childhood special education and had been working with very vulnerable young children but decided I wanted to move it to a new level and decided to pursue another Master's Degree in Social Work. After three years of year round study, I will be graduating in eight months. I'll never make a ton of money at it, but it gives total meaning to my life.

My 15 month old is now 6 and entering first grade. I never thought I'd live to see her go to kindegarten. My most overwhelming fear through the early days and months of my diagnosis was that I wouldn't even live long enough for her to remember a mother's love. Many times in the first weeks I could not even bear to look at her because of this fear. Now she is one of the brightest lights in my life. My oldest daughter is entering her junior year of college. I remember praying that I would be alive and healthy enough to see her graduate from high school. My son who was 11 when I was diagnosed will be a senior in high school, and has appears to be gifted musician. It hasn't been easy these past five years--both my older kids had some signficant delayed reactions to the cancer that kept me running back and forth to counselors with them. But they're both happy and doing well now.

I'll never forget the night I learned about the results of the adjuvant herceptin trials. It was in May of 2005. For some reason I couldn't sleep, so I got up and logged on to the computer. I might have visited this site. Then I listened to the webcast where they announced the results. I was so stunned I couldn't move, and then cried for the next two days. I remember seeing my onc for a 6 month check up a few weeks later. Turned out he was at the ASCO convention and was sitting in the room when they announced they results. He's a pretty practical low key guy, but I'll never forget him looking at me and saying "You know, sometimes the stars are lined up perfectly in the universe". I knew exactly what he meant, and I will never cease to be filled with gratitude for my opportunity to participate in that groundbreaking study.

I wish you all the best. Find your passion, however big or small, and never give up hope.

Mary