Marilyn Goodman

February 2013

From the time I could remember, I wanted nothing more in the world than to be a mommy. I started trying to conceive at an early age but with no avail. In my 20’s, I dealt with ovarian cysts, endometriosis and infertility. I tried fertility treatments when I was 26 but still didn’t get pregnant.

After divorce, I wasn’t in a position to try for pregnancy for a long time. When I was 34, I was finishing the second and final year in my MSW program at Portland State University and in a very happy relationship. Even though my then-boyfriend (now-husband) had four children, I was still determined to have my own baby.

I consulted my doctor in the spring of 2004 to see what type of screening I should do to see how I could increase my chances of achieving pregnancy. My primary care doctor knew my history and was not only a great listener but also as a woman and a mother, she sympathized with my plight. Knowing I was in my mid 30’s and my history, she said we shouldn’t waste time having me try to get pregnant without seeing what my reproductive organs were looking like.

She referred me to an ob/gyn who followed up immediately with pelvic and transvaginal ultrasounds. Shortly after the ultrasound she told me that she had seen something suspicious and sent me to have a CT scan. We both felt certain that it was probably the endometriosis showing up again and I honestly didn’t worry. I had no symptoms at the time, and was running and working out regularly, and training for my first duathalon. I had the CT scan and it showed something on my ovary, but the doctor wasn’t certain what it was. She also ordered a CA 125 blood test which came out above normal but she reminded me that sometimes a CA 125 can be elevated due to other issues such as endometriosis.

My ob/gyn felt that surgery needed to happen immediately to rule out anything “serious”. My surgery was schedule in June 2004, just a couple days after I completed the duathalon and four days before my graduation ceremony at PSU. My ob/gyn said that she was going to have a gynecologic oncologist assist in the surgery just in case there was anything cancerous. I remember that I just kept asking her to please spare my ovaries — I needed to have them to get pregnant! She explained that whatever it was in there was kind of intertwined with my ovary and not just a lump sitting on top of it so sparing that one would be impossible. But, I might still be left with one (hopefully). So the day of the surgery came, and I was a wreck now knowing that there was even a slight chance of cancer.

It was a simple procedure, just a laparoscopy that would be done as an outpatient. When I woke up in recovery I remember hearing a nurse say LMP, which I learned meant Low Malignancy Potential. I figured that wasn’t too bad and went home trying not to stress.

I received the call on Friday, the day before graduation, that the lesion was indeed cancerous. They had removed the one ovary and I still had one intact that didn’t show any cancer. I had a consult with the gyn-onc to go over the next steps. The day I went to see her I was beyond panicked and terrified. She told me that I needed to have a full laparotomy where they would remove all my reproductive organs and take out some lymph nodes and stage the cancer.

At this point she couldn’t tell me if it had spread; it was about 50/50. I left there feeling as if I was going to die within a matter of days. How could I have gone from just wanting a baby to now being someone with cancer? I felt like my “real life” had just finally started and I had so much good ahead of me. Along with thoughts of death were the thoughts that I would never know what it felt like to be pregnant. I would never experience child birth and I would never hear a child call me “mommy.”

It was a dark couple of weeks. Life felt hopeless.

Of course I went online and this only served to terrify me more. All I could find about ovarian cancer was that if you had it you were a goner. Due to my insurance coverage, I switched to a new gynecologic oncologist. The day I met with the doctor and his nurse was the day that some of the darkness finally went away. I was able to feel a little bit hopeful thanks to how they spoke with me and the warmth and comfort I felt with them.

My doctor performed the full procedure right before the 4th of July. I was in the hospital for 9 days. I remember he said we’d have to wait a while for the results of pathology of the lymph nodes because of the holiday. I don’t know what magic he worked, but a couple days after surgery he came in my room to tell me that there was no cancer anywhere but that one ovary and in the pelvic fluid.

Because of this I was staged at 1C. I was so relieved. He told me that I could expect a full recovery after going through chemo.

Recovery was slow and painful. I started chemo in August and, of course, I lost all my long dark brown hair, got sick and felt defeated. I managed to pull through with the help of my family, husband (then boyfriend) and friends. I was still determined to have a baby though and started the adoption process a few months after I finished chemo! In June 2006 I brought home a 4 ½ month old beautiful baby boy from Guatemala who is my miracle and my angel!

In 2007, about a month before I married my now husband, I felt a lump in my groin. I thought that there was no way this could be cancer again. But unfortunately it was! Thankfully, I had so much going for me that when I found out, I knew I had to keep fighting. I had this beautiful baby who needed his mama and a family that I wasn’t ready to leave.

After more chemo and this time radiation, I decided I would not let this damn gene get me again (I had learned in 2004 that I am positive for the BRCA1 mutation which can cause breast and ovarian cancer) I had a voluntary mastectomy in October 2008 and completed breast reconstruction in March 2009.

Unfortunately, the cancer came back in December 2009. I started chemo once again. Feeling miserable and defeated, I lost my hair again. This time, I also started taking Avastin and continued with that until after my chemo treatments were done.

The Avastin quit working by December 2010 and I once again had to confront the Beast. I decided that I didn’t just want to continue doing chemo so I enrolled in a clinical trial for a drug called PARP Inhibitor. I started chemo again in April 2011 and started taking the PARP inhibitor, which is in a pill form. I finished chemo in December 2011 and am now just taking the PARP pills daily. My CA 125 is monitored every three weeks and I have a CT scan every three months.

I am currently in what I consider “remission” with clean CT scans and a CA 125 that is within normal range. Because my cancer is very small, it has rarely ever been detected on CT scans or PET scans. The CA 125 is the marker that is consistently reliable for telling me I have a recurrence.

I deal with this chronic disease by what I call living in “Denial-land!” I take care of my health and treat the disease and drive to SCCA every three weeks for monitoring. But the remainder of the time I just continue to live life like I always have…to the fullest!

I adore being a mommy – it truly is living a dream I never thought would be possible for me. I love being a wife to my amazing husband, and a mother to my four step kids. I also credit staying emotionally healthy during this almost-nine-year experience to the strength and support of my family, my friends, my doctors and nurses, and my faith. I also have always stayed active and exercise regularly, even when in treatment. I eat well and work part time in a job that I really enjoy. Having all the other good things in my life make dealing with this disease tolerable. I wish it wasn’t in my life. I wish I could wake up one day and the doctors would tell me that it’s gone forever, but until that happens, I just keep waking up with a smile on my face and looking at all I’ve been blessed with and enjoying each precious moment I have on this earth!