Geographical landmarks are a funny thing--sometimes being in the same place as you were when something memorable happened can bring you right back to those feelings, as if no time had ever passed. I was reminded of this last night, when I found myself across the Chicago River from the sidewalk where I paced back and forth eleven years ago during my first and perhaps most traumatic IVF cycle. The feelings I experienced then flooded me again, overwhelming me for a moment.
I always tell my clients that the first IVF cycle is usually the worst, because invariably our expectations entering into the cycle are very high. We have pulled out all the stops and gone for the big guns. How could it not work? For many, the first IVF does indeed work--but for the rest of us, the disappointment of treatment failure is compounded with shock that treatment failed in the first place. In addition, everything is all a new experience, and our anxiety is usually higher when we don't know what to expect.
My first IVF was an emotional roller coaster ride that was one of the most intense experiences of my life. It started out badly, when on a Saturday morning right after I started Lupron shots my RE called to tell me that our first cycle would be cancelled. I had learned a month earlier that I was a carrier of Tay-Sachs disease, genetic disorder that is usually fatal. This was not too surprising to me because I am of Ashkenazi Jewish descent. However, the cycle was cancelled because my husband had also tested positive as a Tay-Sachs carrier. This was extremely suprising to us, because he is of Southeast Asian descent and Tay-Sachs is not common in this population.
"Don't worry," my RE told me, "We can do PGD next cycle to find the embryos where you don't contribute your Tay-Sachs! I've got it all set up for you, and we can do it next month!" And thus, we entered the world of preimplantation genetic testing, then in its' infancy. We would be doing a polar body biopsy, meaning that they would only be able to test the maternal genetic contribution to the embryos.
A few days later, I found myself at the genetics lab, where a nervous doctor who clearly didn't usually do procedures on actual human beings gave me a shot of lidocane, and then without waiting for it to take effect, took a sort of hole punch and removed a large divet of flesh from my arm. My pain tolerance is pretty high, but I can still remember how excruciating that was. I endured it because I desperately wanted things to work. I have a huge scar on my arm to this day to remind me of this misadventure.
My sample was sent off to determine the exact genetic mutation I carried so that they could identify it during the PGD. I began to prepare for the IVF cycle again, starting BCP and Lupron. Meanwhile, my husband and I kept scratching our heads, wondering how he could possibly be a Tay-Sachs carrier. It just seemed so improbable.
Of course, head scratching quickly turned into obsessive internet searching. After a few weeks of research, we found one lab in Philadelphia that ran a test for a "pseudodeficiency allele" for Tay-Sachs; apparently some people carry a mutation that causes their blood to react with the solution in the collection test tube, producing a false positive on the Tay-Sachs test. We took our research to the genetic counselor, who had never heard of the allele or test but agreed to test my husband anyway. It would take weeks to get the results.
I began the stimulation process of the cycle with very disappointing results. I remember one nurse yelling at me, telling me I needed to have ten follicles on each side. "You are 32 years old; you should be doing better than this!" I began to experience a feeling of panic and dread.
When it came time for retrieval, they got 8 eggs, but at day 3, only four were viable embryos. Two were of good quality. Unfortunately, the genetic testing showed that the two good embryos were the ones that carried my Tay-Sachs gene. My husband's pseudodeficiency allele test wasn't back yet. At this point, we had nothing to transfer.
I was filled with shock and despair. I was downtown that day, and unable to concentrate on my work, I went for a walk along the Chicago River. I felt hopeless. I couldn't believe that after everything, my cycle ended without anything to put back. I remember thinking, "This is the end of the line." I cried for a while, and then walked back to work to complete the rest of my day.
I was wrong, though. It wasn't the end of the line. On the afternoon of day 5, we got a call from the clinic. My husband's results were back--he tested positive for the pseudodeficiency allele, which meant he wasn't a Tay-Sachs carrier after all. We raced to the clinic to transfer the two affected embryos, which were still alive and doing well. Nine days later, I got a positive pregnancy test. It looked like my luck had changed again. My betas were strong, and I had lots of early pregancy symptoms. Unfortunately, there was no heartbeat at 6 and 7 weeks, and I ended up having to get a D & C. I was devastated all over again, filled once more with shock and despair.
All of those feelings came rushing back to me last night, as I stood across the river. For a moment, I was back in that time again, but my daughter excitedly squeezed my hand and I came back to the present. We were in the process of boarding a architectural boat cruise organized by the American Girl store. It was a beautiful summer night, and there were happy girls and their dolls everywhere. I was struck by what a difference it made to be on this side of the river. When my first IVF was taking place, my adopted daughter was just a few months away from being conceived in a faraway land. That long ago terrible day on the river wasn't the end of the line; it was the beginning of a journey that would span continents and years that eventually would give me so much for which to be grateful.
As we toured the city, I basked in the glow of the city lights and in the world of dolls and childhood imagination. I always tell people that infertility is a phase, and although the pain never goes away completely, you can have a wonderful and happy life in spite of, or perhaps because of, the experience of infertility. I say this because it is true; and if I can survive infertility and find some measure of happiness, then I know you can too.
If you are reading this and you are having a hard time right now, please remember that one day, you too will be on the other side of the river. I hope that your crossing will be smooth, and happen very soon!