Ellen-MP storyAs a perinatal social service provider, working with pregnant women and new mothers, I spent many years looking forward to and planning my own family with my husband.  In fact, my oncologist later called my first pregnancy the “best-planned pregnancy ever,” as I did “everything right”—making sure I took good care of myself, taking vitamins, and tracking what I ate. So we were overjoyed when the pregnancy test read positive and then quite saddened when at 6 weeks I began spotting. I went to my OB/Gyn’s office right away but was not able to see my regular doctor. Instead I met with a different physician in the practice who happened to also be the chief OB/Gyn resident at a large teaching hospital nearby. After an ultrasound, he delivered the sad news that the pregnancy was not viable and explained that we would wait a few weeks to miscarry naturally and then I’d be given the go ahead to try to conceive again.  He mentioned that sometimes he would order hCG blood work, but because everything looked normal, he wouldn’t burden my insurance with this “expensive and unnecessary test.”

My husband and I returned home, grieving but hopeful that we would be able to conceive again soon.  As predicted, my spotting turned to bleeding, but it seemed to be increasing in quantity. We hadn’t told friends about the pregnancy, so I continued to work, visiting teen mothers in their homes, and I hoped that the bleeding would soon stop. Strangely, however, it only seemed to get worse, and I developed additional issues. I was out of breath and felt as though I had a bowling ball in my uterus that was getting larger. When I flipped from one side to another in bed at night, the bowling ball would fall heavily as I turned. Friends began to suspect that I was pregnant, pointing out my bulging abdomen and congratulating me. I’d sadly tell them that they were mistaken.

At what would have been eight weeks of pregnancy, I called the OB/Gyn’s office and told them something didn’t feel right. They asked me to come in for an ultrasound.  I again happened to receive an appointment with the chief OB/Gyn resident.  He did a quick transvaginal ultrasound but did not examine me. When I explained the worrying symptoms—difficulty breathing, the bowling ball in my stomach—he dismissed them, saying it was all part of a normal miscarriage and that “some women find it more upsetting than others.”  Crushed and feeling as though I had just been told I was emotionally unstable, I left the office and drove straight to the mall, where I purchased a few new skirts beacuse I could no longer fit into my clothing.

I continued to bleed and experience sharp pains in my abdomen. These sharp pains had begun before I “miscarried,” and I was told by a midwife in the practice that they were “stretching pains.”  They had only gotten worse as the weeks went by. Just a few days after seeing the physician at eight weeks, I was standing in my office at the copy machine when suddenly a large flow of blood came from between my legs.  I was drenched all the way down to my ankles.  I went home, cleaned up, threw away my clothing, and returned to work. After all, I had just been told that this was a normal part of miscarriage.  Looking back, that is one of the moments that left me the most traumatized. At that point I was hemorrhaging, yet after what the doctor had said I doubted myself so much that I felt I could not seek medical assistance. I am likely lucky that I did not bleed to death.

Two more weeks of bleeding, pain, and people congratulating me passed. During that time, I continued to work and even gave a presentation to hundreds of people to raise money for the nonprofit where I worked. I had difficulty standing during that presentation and had to lean on the podium, often bending my legs up toward my abdomen to relieve the pressure. I returned to my OB/Gyn appointment at what would have been ten weeks of pregnancy—the visit where they were supposed to tell me that it was okay to start trying to conceive again.  This appointment was with my regular OB/Gyn whom I originally had chosen to deliver the baby.  When she came into the room and asked how I was doing, I simply said to her “just touch me right here” and pointed to a spot about two inches above my belly button.  She did so and said, “that is not right”—she could feel the hard tumor with only a light touch.  She sent me straight to the office of a gynecologic oncologist who cancelled her afternoon teaching schedule to see me.  As I walked into her office, she and her receptionist met me in the waiting room and gave me a big hug and said, “We are going to be great friends.” And they were. I still look back on that moment with such relief and thankfulness that I met them. Two hours later, my husband in the waiting room, I was in surgery. Afterward, the oncologist told me that the size of the tumor had been that of a twenty-plus week pregnancy.

Unfortunately, my molar pregnancy journey did not end there.  I spent the night in the hospital, and because I was feeling nauseated, I was given compazine in my intravenous line.  I became very anxious and panicky, which I later learned is sometimes a side effect of compazine.  I was discharged the next day and went back to work almost immediately.  I regretted not having told anybody about the pregnancy, because at this point it seemed too late to do so, leaving me without much of a support group beyond my husband and immediate family.  People at work did not know what I had recently experienced, and of course I continued to work with teenage mothers, supporting them through pregnancy.  Following my surgery, the doctors had told me to expect some spotting, so that was not a surprise. However, the bleeding again began to increase in amount, accompanied by more pain.  Three weeks after the surgery, I had another gush of blood and recognized the large water-droplet (trophoblast) shaped clots as the regrowth of the tumor. In fact, it had almost returned to its original maximum size. My boss drove me to the hospital.

Admitted again, I learned that the tumor must have invaded my uterine walls, so the surgery had not been able to remove all of the cancer.  The nurses spoke with my oncologist and came back to report that I would begin chemotherapy that night with methotrexate. I was terrified at the thought of chemotherapy, and my fear grew as I waited in the hospital bed for several hours. The few friends who now knew about my ordeal called to comfort me. One tried to talk me out of chemotherapy, suggesting that there were more natural ways to address the cancer. It was exhausting trying to hold up my end of the conversation. That night, however, I received my first dose, and it was not nearly as bad as I had feared.  I learned that I would not lose my hair with this chemo agent and that it was given as an injection, no IV required. I did receive antinausea medications, including Valium and compazine again.

After discharge the next day, I was directed to come back for regular chemotherapy injections, blood work to monitor my hCG levels, and a CAT scan in a few weeks.  I continued to work. I noticed no side effects from the chemo or medications but did frequently feel anxious. This seemed understandable given the circumstances. Yet one day I walked into the hospital and had a sudden panic attack that was terrifying. I can barely describe how it felt, only that I was sure I was going to die and didn’t want to die. I ran from the lobby of the hospital into the bathroom and locked myself in a stall. I stayed there, crying and shaking, for quite a while before making my way several floors up to the chemo suite. I pressed myself against the walls of the hospital hallway as I navigated myself to the right place. When I finally arrived, I collapsed into a chair and began to sob. The chemo nurses jumped into action, put me in a private room, served tea and cookies, and called a therapist. I was much calmer after speaking with her and when it was determined that this was likely a side effect of the compazine, I was directed to stop taking this drug and have never experienced another panic attack since.

I was hopeful that this was the end of the road for the molar pregnancy but was disappointed to learn this was not the case.  Following a CAT scan, my husband and I met with my oncologist, who had continued to be a wonderful source of encouragement.  Now she was looking anxious. She informed us that the CAT scan had shown that the tumor cells had metastasized, spreading to my lungs. It was time to “bring in the big guns.”  I began a new chemo regimen: every other week for three days in a row I would go to the oncology wing and receive three days of chemo agents. No longer an injection, these drugs were delivered intravenously across seven hours each time. I did begin to suffer from side effects; one of the chemo drugs was known to be rough on the lungs, and I would ache for days afterward. I hated the metallic taste in my mouth, my brain felt “fuzzy,” and I did lose all of my hair. During one treatment, I experienced an infusion reaction during which my blood pressure shot up, my body arched on its own accord, and I began screaming involuntarily. The nurses rushed into action, and I received a large dose of Benadryl to counter my reaction. This was added to the routine thereafter. Throughout this all, my husband, family, and friends were an incredible support, not to mention the chemo nurses who worked so efficiently and cheerfully to keep me comfortable. I worked for several more weeks, leaving the IV port taped into my arm so that I wouldn’t require as many needle sticks, but I eventually took a leave of absence when I became too tired to continue.

Three months after beginning the “big guns” and many blood tests later, my hCG levels had finally returned to an acceptable level and the chemotherapy ended. My oncologist prescribed the birth control pill, saying that I needed to avoid getting pregnant at all costs for the next 12 months. My chemo agents, besides being effective, had been chosen in part because they were the least likely to have an impact on my future fertility.  I looked forward to a year of recovery before starting over again.

As luck would have it, my journey was not quite finished.  I continued to take the pill, had regular blood tests, and worked.  Life pretty much returned to normal for my husband and me, though it is fair to say we were pretty traumatized by the experience.  But we were overjoyed when the year was complete and I had the go ahead to try to get pregnant again. I stopped taking the birth control pill, and we planned to give it three months before trying to conceive. Only a month had passed when I was hit by my first hot flash. I was sitting in a concert with my in-laws when I was overcome by a strong feeling of heat and nausea. I knew immediately what it was. Over the next few weeks, they came stronger and more frequently. It was January, so my officemates were astounded by how hot I felt despite our chilly office. My doctor reassured me this was nothing to worry about, but after I complained a few more times sent me for new blood work.  Sure enough, my hormone levels measured as postmenopausal.  It appeared that the birth control pill had held me in check over the past year but once I finished that, thanks to the chemo, I had entered menopause prematurely.

My oncologist immediately referred me to a fertility specialist. There I was told that I would likely never be able to conceive; my fertility had forever been compromised by the chemotherapy. One nurse told me that I should be thankful that I survived the cancer and that I did not deserve to ask for more. Her daughter, an older teen, was also suffering from cancer she told me, so I know she came from a place of pain, but the pain her words inflicted on me went very deep nonetheless. I continued to see the fertility experts, who did many ultrasounds measuring my ovaries and looking for eggs. My periods returned, but the doctors were not hopeful. They said there were no interventions available to me besides an egg donor. My husband and I considered this but were then surprised when a friend called to offer to donate eggs to me. This was then and has continued to be the most incredible offer of a gift I have ever received. Knowing that she was willing to do this has added a permanent spot of light and gratefulness to my life forever.

Regardless, it wasn’t meant to be because in the summer of 1999, on my husband’s birthday, I was able to tell him that we had conceived naturally.  I’d like to say that the journey toward become a mother was easy from that point forward, but it was not.  I found it very difficult to trust that this pregnancy would actually be a success and suffered from significant depression and anxiety throughout.  We were overjoyed to delivery a healthy baby boy in early 2000.  I continued to experience postpartum depression and anxiety for several more months, but with the support of my husband, family, friends, and of course my darling baby, I managed to make it to the other side.  The fertility experts said that that was likely my last egg; my oncologist told me I had had a miracle baby. Only the oncologist was right!  I went on to conceive again, having a “normal” miscarriage and then three years later delivered a second beautiful little boy. I have not experienced any recurrence of the cancer but did return to menopause at an early age and have needed treatment for that. After staying home with my boys for many years, I have returned to work part-time; working with new moms again.