Unspoken, Part 2

This post is the second in a series I am writing on the subject of chemotherapy and fertility. It has taken me the most time, intentionality, and courage of anything I have written to date.

As always, the experiences and opinions voiced in this article are mine. My story is not the story of all women, but a tiny piece in the large mosaic of the complex issue of fertility. I wrote honestly and openly – mostly because I wish I had the opportunity to read another patient’s account regarding fertility treatment. The intent of this post is not to overshare, nor is it to cast judgment on others who would, or have made, different decisions. I believe that every person deserves the right to make informed choices about their bodies, and that includes reproductive health.

Last week was Infertility Awareness week in the United States. 1 in 4 men and women struggle with infertility. I believe that the more we share our truths about the complex issue that is fertility, we can help mitigate the stigma and end the cycle of isolation, shame, and grief that is so often at the center of fertility struggles.

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The next day at the fertility clinic, I was taken back to a tiny room with no windows. A woman who spoke very quickly and a touch too loudly put photocopied papers about in-vitro fertilization in front of me. She proceeded to draw all over them, numbers and figures and arrows zigzagging and punctuating the infrequent pauses in her sentences. I clung to the facts that I could. I would need to give myself injections for nearly two weeks and come to the office every day for monitoring. The egg retrieval would require me to go under anesthesia, something I deeply feared since my last surgery. Was I married? In a relationship? The doctor cautioned me against freezing embryos with donor sperm, because if I had a partner someday, they may not want to use them. I needed to have an ultrasound today, now, if I wanted to move forward. They’d also need to move my chemo date back. What’ll it be?

I didn’t talk and I didn’t move. Everything was happening on hyperspeed. I felt small and powerless. This was not a woman who knew what to do with an indecisive patient.

She and her assistant talked around me, to each other, to my mom, and suddenly, without any spoken on nonverbal consent from me, she left the room and started preparing the other room for an ultrasound.

I can’t begin to tell you how dehumanizing this was. I may not have known if I wanted an ultrasound or not, but I sure as hell deserved the dignity of being treated as an autonomous human being.

The day continued in tears. Everything was moving faster and faster. I was inconsolable, unable to think of anything else, and desperate for guidance or a sign of what choice I should make. A friend of mine who was navigating her own fertility decisions encouraged me to get a second opinion. She reminded me, gently and lovingly, that even if I did go through with the retrieval, I wasn’t obligated to use the eggs. This was a way to preserve choices and options, something I did not have otherwise. She shared the name of a fertility clinic closer to home, a half-hour away. Over email, the clinic gave me an estimate of cost, and it was a third of the cost of my first opinion. I didn’t want price to be a driving factor, but I’d be lying if I said it wasn’t a consideration.

I went to get a second opinion at the clinic she recommended. This room had windows, which made me feel less claustrophobic, and I came prepared with my own tissues. I explained to the doctor the specifics of my diagnosis and my deeply held fear of surgery and anesthesia. She listened carefully, explained more about the process, and how they could, fortunately, start treatments at any time given my personal medical history, which was really encouraging. The number of days in the preparation and retrieval process varies as they monitor your hormone levels with daily bloodwork. The surgery would likely fall the second weekend of March, and any physical activity would need to be stopped in the days before the retrieval to reduce the risk of any complications.

I hesitated. I was in a production of Peter and the Starcatcher, and we ran for two weekends in March. I had been rehearsing since December, jumping all over boxes and platforms. I had no understudy, and more so, I did not want to miss the one thing I was looking forward to before my life changed for the foreseeable future. When I shared this, there was an undercurrent of judgment, likely a combination of both real and imagined circumstance. I understood that to someone else who knew that parenthood was what they wanted, it sounded insane to choose a community theatre production over having a child. But this was my source of joy, the thing I had to call my own before turning my body over to the imprisonment of chemicals and poison for a term of 6-13 months. I valued this artistic commitment and the fulfillment it brought me over undergoing a costly medical procedure that I wasn’t even sure I wanted.

The doctor proposed another idea. What if we waited, maybe another week? It would delay the retrieval until after the show had closed. I could delay chemo by one week, and I’d be in the clear.

I felt I had found my answer, and that maybe, this time, I could have it all. With tears of relief, I agreed to start fertility treatments.

After a blood test and another ultrasound, it was time to start fertility injections. I was fortunate enough to receive the medication completely free of cost from the LiveStrong foundation. When the box arrived, it was nearly too large for me to carry. I quickly stashed it in the refrigerator, where it would need to be kept to maintain efficacy.

Here’s how a day on fertility treatments looks: I’d have an appointment between 7 and 8 AM almost every morning. They would draw blood, which would be tested for various hormone levels, and perform an ultrasound to see how the eggs were developing. Following the results of the blood test, I would be called, usually by 2 PM, with instructions for that evening. I’d have at minimum one shot to self-administer, usually two, at the same time each evening. It sounded scary, but there were videos to watch online, and soon, they became routine. I would swab a spot near my belly button with an alcohol pad, use either the pre-mixed pen (easy) or would quickly mix and fill a syringe with the hormone shot needed. Soon, my stomach was full of tiny pea-sized bruises as souvenirs of my courage.

 

 

 

 

 

 

 

 

 

Since I had rehearsals most nights, I’d duck out of running a scene, grab my insulated lunch box with my medication inside, and give myself the injections. Mind you, I was playing Smee (of Peter Pan fame), so I was doing this all in costume while wearing an artfully applied beard. There was an evening that I was a passenger in a car when the time came to give myself the shot. I politely shielded myself from my friends in the backseat and injected at a red light. I even administered the final timed, intramuscular “trigger shot” on a New Jersey Transit train, which thankfully had stopped at Secaucus at 10:31, just sixty seconds after the prescribed and water-tight time of 10:30. I joked to friends that, god forbid, I ever had to do this again – I should start a youtube channel and give myself the shots while skydiving.

Fertility treatments are not insane by any means, but not what I’d call a comfortable process. I constantly felt bloated and like I had basketballs in my stomach. In addition to the emotional weight of the chemo situation and telling my students that I wouldn’t be returning to work, I was pumped sky-high full of hormonal as well. In the final scene of Peter and the Starcatcher, I had to deliver the line, “until one night, many years later, she watched as Peter flew off, with her daughter in tow.” Its emotional significance was not lost on me.

As the end of the process neared, I knew the next hurdle would be preparing to undergo anesthesia, which filled me with fear. The last and only time I went under for surgery was when I thought my tumor was a lipoma, and this nightmare road to diagnosis had begun. In the time since, I have experienced nightmares in which I black out and wake up presumably hours later with no control over what had been done to my body. But through a stroke of luck, one of my best friends who is an OB-GYN works at the center where my retrieval would take place. He promised to get coverage so he could be there to hold my hand as I went under.

As we neared the “any day now” territory, I waited for the call each day that meant my retrieval would take place two days later. The call finally came and the nurse told me it would be two days later, on a Friday. I called my mom and asked her to take off work so she could drive me to the surgical center. Unfortunately, I had called her too soon – just a few hours later, I got another call from the fertility clinic. My retrieval would be Saturday instead. I sent a text to my friend so he could arrange for coverage at work. “Oh no,” he responded. “I can’t be there then, I have a meeting I can’t get out of.” He promised to talk to the anesthesiologist and find out who would be on surgery that day. I understood, and I was so grateful for his help, but I couldn’t help but feel disappointed.

I would face the operating room alone.

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To be continued.