to submit your own story, picture, song lyric, poetry, anything that expresses your voice in this battle.
The Contents:
The Longest Year Ever......My Story
Awaiting the Other C......Deb's Story
"Awaiting the Other C......Deb's Story" Well, it’s not really just MY story, it’s my daughter’s story too. You see, my cancer journey began in my obstetrician’s office during a routine pregnancy ultrasound. I was 27 years old, and 15 weeks pregnant with my first child. My obstetrician was unable to pick up the fetal heart tones with the Doppler device, and used ultrasound to verify that my baby’s heart was indeed beating. At that time he noticed what appeared to be a uterine fibroid about the size of an orange, and scheduled an ultrasound for the following week at the local hospital.
At that hospital ultrasound, the mass was now the size of a grapefruit. I was told it appeared to be a uterine fibroid that was growing larger due to pregnancy hormones. I was further told that the odds were still in my favor to carry my baby to term, and that it would probably stop growing or shrink by the next ultrasound. I left nervous and afraid, with a follow up appointment scheduled for a month later. At that next appointment, the mass had grown to a shocking size. It was nearly the size of a football, which explained my large belly – I appeared to be at least two months farther along than I really was. It was at that appointment that the ultrasound technician noted that there was some separation between the mass and the uterus, and brought in the perinatologist to determine if the mass was perhaps ovarian, rather than uterine. They couldn’t be sure. Since I was pregnant, my testing options were limited – CT scan was not an option.
I was sent for an MRI, which was inconclusive, but suggested ovarian origin of the mass. Before even entering the horribly claustrophobic MRI tube, the thought occurred to me out of nowhere: “Do they think this is cancer?” From then on, I think I sort of knew, but held out hope anyway. My OB, who is a very cautious doctor, wanted to send me to another doctor to discuss surgical removal of the mass. “What kind of doctor is it?” I asked. “A gynecological oncologist,” he said. The word “oncologist” rang through my head and I felt like I couldn’t breathe. Would it turn out to be cancer? Would I lose my baby? How could they possibly operate on my pregnant belly? Would I die? How could this be happening to me?
The odds were it would be benign, I was told over and over again. The odds were less than 5% I would lose my baby during surgery, which was better than the odds for her survival without surgery, due to the size of the mass. I opted for the surgery, and the tumor was removed a week later. It was ovarian, and the ovary and tube were removed along with the tumor. Pathology couldn’t agree on what it was, so I was left to wonder while it was sent off to Harvard. I scoured the Internet for possibilities based on my age, the size of the tumor, and any other factor I could think of. In my heart of hearts, I knew the news would not be good. Once I was not in so much agony from the 10 inch vertical abdominal incision, I tried to cheer myself by joking about my Ivy League tumor and waited.
A month after surgery, and a week before my 28th birthday, the final diagnosis was in. It was an Endodermal Sinus Tumor. I knew from the look on my doctor’s face what that meant even before she went on to explain that it was a type of germ cell cancer of the ovary. I was to meet with a perinatologist at the hospital who is one of the leading experts in cancer during pregnancy to discuss a treatment plan from her perspective. I consider myself very lucky she was at the same hospital. I was shocked to learn that chemotherapy is a valid option in the second and third trimester of pregnancy in a lot of cases.
Because of my desire to protect the baby growing inside of me, the surgery had been as quick as possible, which meant that biopsies had not been done, and I was not staged. I was assumed to be early stage, as there was no visual evidence of disease aside from the tumor. Also, the tumor was completely encapsulated, meaning it had not ruptured before or during surgery. However, this type of cancer is very aggressive, but very sensitive to chemotherapy, so treatment is always recommended even for stage 1 patients. Without chemo, long-term survival rates for this type of cancer, even early stage, were as low as 27%. With chemo, that number could be as high as 75-90%.
After discussion with my gynecological oncologist, perinatologist, and obstetrician, as well as a long talk with my very supportive husband, I went ahead with the chemo.
I still remember the moment I knew it was real – when I first cried. My mother was with me and she asked the doctor, “Will she lose her hair?” The doctor said yes, the hair would go. The reality of that hit me like a slap in the face – it hit me in a way that nothing else could. I finally understood, that I was 27 years old, pregnant with my first child, and somehow had suddenly become a cancer patient.
My chemotherapy regimen consisted of 5 days of etoposide and cisplatin every third week, along with 8 treatments of bleomycin once a week. The bleomycin treatment took only about 30 minutes in the infusion center, but during “chemo weeks” I spent about 3 or 4 hours each weekday receiving etoposide and cisplatin. My baby was monitored via regular ultrasounds, and my OB visits were once every two weeks, then later once a week. That was in addition to appointments with my perinatologist, my gynecological oncologist, the lab for bloodwork, and pulmonary function tests to make sure the bleomycin wasn’t destroying my lungs. I was sick of doctors already, and I had a long road ahead of me.
My family was so precious and helpful to me during this time. My mother is a teacher and was off for the summer, so pretty much gave up her whole summer to shuttle me back and forth to my many appointments. My husband also took his turns, and was a vital source of emotional support, and I couldn’t have made it through this emotionally intact without his help. My dad also did a lot of driving around with me when he could – he is a cancer survivor, and that helped me a lot. He knew what I couldn’t express so many times. My sister drove hours from another state to spend time with me and clean my house. I learned that cancer does not only affect a single person, but everyone who loves that person. I also learned that some people are afraid of cancer, and those people stopped calling or coming around. My true friends called twice as much as before, and the others went their separate way.
The first cycle I was in the hospital an hour from my home with a new short haircut, scared and unsure. It went well, the baby was fine, I was not nauseous or sick, thanks to the zofran and decadron. My blood counts dipped a little, but recovered nicely. I allowed them to put a “port” in my left arm so that chemo could be delivered directly to a large vein in my chest, and I could do the next cycle as an outpatient. I came in for the next treatment bald, tired, and very pregnant. My port looked “iffy” to me, but they said it was all right. Unfortunately, they were wrong, and I ended up having the infected port removed a week later, developed a 103 degree fever, and was admitted to my local hospital for 3 days to receive IV antibiotics. For my next cycle, I had a PICC line put in my right arm, which was similar to the port, except I would have little tubes (to connect the IV to) hanging out of my arm until chemo was over. I consoled myself with the thought that it was halfway over. Still I felt like a freak. I was seven months pregnant, wearing a bandana to cover my bald head, and had tubes hanging out of my arm. Even the other chemo patients stared. It was so ironic to me that during all of this treatment to kill the cancer, it was the first time I really felt “sick.”
I hid out in my house between treatments most of the time. I felt fat, ugly, and freakish. I worried constantly about the baby growing inside of me, and spent a lot of time lying in bed with my hand on my belly feeling her kick. I prayed that both of us would be okay at the end of this journey. I prayed I was doing the right thing for my unborn child and myself.
When I did venture out of the house, most people I saw would studiously avoid eye contact with me. Perhaps they feared making me “uncomfortable,” or perhaps they were afraid of catching whatever was wrong with me. Either way, it was dehumanizing and depressing. I was also tired, mildly nauseous, and some uncomfortable, but not unbearable side effects during those off weeks. My tongue and mouth would burn and hurt, my ears rang all the time, and my fingers would often go numb or get pins and needles. After a few treatments I was nauseous, but determined not to throw up for fear of dehydration resulting in hospitalization. Worst to me was being bald, though. In my experience, it was the most demoralizing part of the whole journey. I just kept reminding myself: better bald than dead.
Chemo ended when I was 8 months pregnant, and all my bloodwork looked good. The baby was doing well, and there was no sign of cancer. A month later I gave birth to my beautiful, healthy baby girl, and my husband and I named her Emily Faith.
It is now nearly a year since my surgery, and I anxiously await the results of each follow-up blood test, CT scan, and doctor visit… but so far everything is normal. Some days I live in fear, and some days I believe it is truly gone forever. I await my 2 year anniversary, which is a big one for this type of cancer… then I will worry about making it to 10 years, at which point they will call me cured. I have heard the first C word – “cancer” – and so far survived. I await and hope for that other, wonderful C word sometime in the future – “cured.”
