A week ago today, Arthur and I had our post-cycle follow up with the RE. As is my usual when I have an RE appointment, I had, over the past month or so, compiled a list of questions I wanted to ask. I jotted the questions down as I’d think of them, and by the time the end of May rolled around, I had a solid list. We faxed them to the clinic to place with my paperwork for the appointment.
What I did not include on that list was probably far more telling than what I did include: I opted, for the most part, to leave out the intense emotional struggle about my experiences with fertility treatments. As far as I was concerned, this was more of an issue for a therapist than an RE. I’m sure some of it bled through in the phrasing of the questions, but I mostly dismissed the whole thing as too messy and time consuming to delve into.
Walking in the door of the RE clinic was harder than I expected. It’s one of those typical medical office waiting rooms, although a little nicer than most with olive green upholstery and slightly “arty” tables sporting silk flower arrangements. It doesn’t seem like the kind of place that should provoke a deep emotional response, but it’s the very nondescript quality juxtaposed with some of my worst memories that makes it almost more weirdly upsetting. I kept up a nervous stream of chatter with Arthur as we sat and mentally placed a Frida Kahlo painting on the soothing colored wall that seemed more appropriate to my situation.
By the time we were taken back to the office and Dr. E came in to talk to us, I could physically feel the anxiety welling up. I stared at the stylized designs on my cardigan sleeves, arms tightly crossed over my chest. Relax, I kept telling myself. I unbent enough to shake Dr. E’s hand and to put what I was trying to pass off as an attentive, calm expression on my face.
That lasted for all of about 30 seconds. We got to discussing my ectopic, and Dr. E pointed out that I was fortunate, that I hadn’t had to have a blood transfusion, hadn’t needed surgery, and that I’d made it out as smoothly as it was possible. This, incidentally, is not an untrue statement and I could tell that he hadn’t made it in an insensitive or dismissive way, more simply as a statement of fact. It didn’t matter at that moment. I had had it.
“Yeah, yeah,” I interrupted, finally unable to master the caustic combination of anger, grief and anxiety chewing through me, “I know. I know I’m ‘lucky’. I get that. It could always be worse.” I felt the tears start to well up, spill over, and paused. “I can’t believe I’m having to deal with this bullsh*t disease that’s not even real.”
The fact is, even as much as I try to tell myself that infertility is a very legitimate health problem and that PCOS is definitely a disease, there is a part of me that struggles to believe that. There is always some part of me that thinks, but I could have cancer. Or kidney failure. Or a debilitating autoimmune disease. I feel guilty for feeling so awful and for not soldiering on with a brave face. This was first time, however, that I’d stated it so baldly in front of a doctor.
I was staring at the desk when I said all of this, unable to even look Dr. E in the face. There was a pause. Then Dr. E closed the folder with my questions in it, and simply said something to the effect that we could talk about the details of another IVF cycle on a different day. “These aren’t really what you’re concerned about, are they?” he asked me gently, gesturing to the folder.
Part of me, the part that wanted to leave the office with some threadbare shreds of my dignity intact wanted to say these questions are what I’m concerned about, answer those and we’ll be on our way, but I couldn’t. “No,” I admitted, “they’re not. I can’t believe this has happened to me. It all sounded when I came here just over a year ago like it was going to be so much more simple than this. When the ectopic happened, all of a sudden I’ve started to have to face the fact that this isn’t a ‘when’ any longer. It’s an ‘if’, and that’s really hard for me. I mean, I’ve known since I got diagnosed that it was an ‘if’, but there was so much to try and Dr. D was so positive. Now I have to face that I may never have a successful pregnancy.”
So we talked. I cried. Arthur was awesome and was able to calmly bring up some of the stuff we’ve been discussing at home. Dr. E told us that he was glad we wanted to take some time off before even considering starting another IVF cycle. He mentioned that I probably needed to have some professional counseling at this point. I managed to bring up the question that I have struggled with for the past months about where to draw a line in treatment. “I know we could keep doing IVF for a long time,” I started.
“No,” he said, stopping me.
Dr. E explained that another fresh cycle was medically reasonable in my case if that was what we wanted. He stated, however, that IVF was a major procedure, he could see how much distress I was in, and it definitely wasn’t something he wanted us to do over and over again. He told us that the maximum number of fresh cycles he felt comfortable doing with us was three and even that number was highly dependent on our emotional state, our wants, and whether or not new information came into play that would affect the chance of success.
It was at once what I needed to hear and what I never wanted to hear: that while IVF is still an option now, we are approaching a point where IVF would no longer be a good way for us to build our family. However, I was glad that Dr. E did not try to minimize the impact of IVF on us or the limitations of medical science in treating infertility.
Arthur and I have talked a lot about where our limits are as far as treatment. At this time, we have tentatively decided to proceed with another fresh IVF cycle probably in late August or early September to give us some time to heal and think. If we’re not ready, that’s fine too. Even with this as our current plan, we still know that both of us need to start considering what life looks like beyond fertility treatments because there are no guarantees.