Unspoken, Part 3.

This post is the third and final 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.

April 21-27 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.

---

On the day of my egg retrieval, I arrived early to check in at the front desk. I had filled out the paperwork to appraise the medical staff of my history, and then sat down. A few minutes later, I was called up to the front desk and told to swipe my card as instructed for payment. I squinted, blinked, and looked again. The total displayed on the screen was nearly $500 more than what I had agreed to at the clinic. I explained this to the front desk attendant, who told me there was nothing she could do. I looked over to my Mom, and then down at the total again.

There was no going back. I couldn’t start the process again, and there was no time to try to contact the fertility clinic. Drawing my lips together into a firmly held line, I swiped my card and took a seat.

Everyone I spoke with that day was as nice as could be, but it didn’t keep my heart from pounding as I was called back and got into a gown for surgery. My hands were shaking, my eyes watering, and no amount of yogic training could keep me in a steady rhythm of breathing. I had a pre-surgical meeting with the doctors and was told I was in great hands. I flinched at any reference made to how the anesthesia would be “the best sleep ever.” After what seemed like simultaneously hours or seconds, it was time. I was taken back to the operating room, where a radio was playing and everyone in the room was laughing and making jokes. It strikes me each time that I’m in a hospital that while this is a pivotal day in my life, it’s just someone else’s Saturday. With my palms sweating and my arms retrained for surgical prep, I struggled to keep myself calm. The anesthesia started through my IV, and then there was nothing.

I came into consciousness in a curtained room. I was sore and I didn’t see anyone I recognized. I hated not knowing how long I had been out or how I had been seemingly interacting with the nurse before remembering or realizing. As the nurse checked my pain level, I was told not to exercise for two weeks – which was news to me and another disappointment, as it eliminated any plans of getting in more normalcy before starting chemo. After a little while, my mom was brought back and we were released to go home. I was cranky and in pain. I had re-lived my most painful memory and paid more than I expected on top of it. I was tired. I just wanted to go home and watch Netflix.

As I lounged on the couch a few hours later, sore and tired, I got a phone call from the surgical center. A staff member informed me that they were able to retrieve seven eggs. Of those seven, three were usable.

My heart stopped. I had not prepared for this.

In the research I had done, numbers mattered. There was the possibility of 0 – 30 eggs during the retrieval, with the far ends of the spectrum being less frequent or likely occurrences. The younger you are at the time of your retrieval, the more eggs the doctors are typically able to retrieve. Of the eggs retrieved, 60% are usually viable for freezing. Most people about my age were able to have at least 12-15 eggs retrieved, and my doctor stressed in our consultation appointment that at 29, I would be happy with the results.

But I was far from it. They’d retrieved well under the number of eggs I had hoped for and fewer than half were viable.

The number game quickly continued. That meant that if I chose to go through IVF down the road, 70% of those mature eggs fertilize successfully. I’d have one to use and one as a backup. For my age and the number of eggs retrieved, there was a 16-38% chance of IVF resulting in a child’s birth.

16 – 38%.

That felt like nothing. If there’s a 16 – 38% chance of rain, I don’t bother to pack an umbrella. Hell, I’d get on a motorcycle if offered, and I’m pretty cautious.

I was crushed. I had convinced myself that undergoing these fertility treatments would secure my options, but in reality, I had paid a lot of money to secure another very expensive gamble in the future. I was crying and I wasn’t even able to name why. Was I crying for the children I maybe wanted and now felt were out of reach? Or was it because my body had failed me, betrayed me, yet again? In the days following, it was harder still was telling people who knew about the procedure and asked how it went. “Well, you don’t want more than three kids, do you?” “All you need is one!” “Three is better than nothing!” Well-meaning, I’m sure, but each remark smarted, the wound still raw. I wondered, for the millionth time, how much more heartbreak I could endure.

It’s been just over a month since my retrieval. I’ve had time to get a little bit of distance and perspective. If I could do it all over again, I wouldn’t. Regret is a tricky thing: I did the best with the knowledge I had, but it doesn’t stop it from hurting. I wish I had been prepared for the possibility of disappointment. Over and over again, people told me I was making the right decision and assured me it would work out fine. Looking back, I realize now that the majority of those people were mothers – those who both can’t imagine their lives without children – and doctors – those who can profit, exponentially, off of the desire and desperation of others to have a baby of their own. I am not saying that their words were motivated by anything other than comfort or assurance, but there’s an innate bias in their opinion.

I don’t think I’ll do anything with these eggs. I’ll probably donate them to research after the five years of freezing I’ve prepaid is up. Truthfully, I cannot forsee a future in which I’m willing to open myself up more to the potential heartbreak of pregnancy or IVF. I’ve already been hurt enough, and the process hasn’t even included an attempt at pregnancy. My fertility decisions were initiated in the interest of preserving choice and options. My heart aches for those who have endured this cycle hoping for pregnancy, month after month, and been disappointed. The emotional and financial stress of fertility treatments is staggering. One round of IVF, without medication, is $14,000 (national average, USA). These are rarely covered by insurance. The cost for surrogacy is between $70,000 – $100,000. Even if I find myself in a place where my emotions are changed, I cannot see a reasonable future for myself where that is not a shattering financial undertaking.

“The final stage of healing is using what happens to you to help other people.” – Gloria Steinem

In this narrative of loss, here’s what’s left, my truth and my story.

If I sound bitter, I am. If this all seems indignant, you’re right, I am. If this wisdom seems hard won, it is.

I do not understand why my fertility was never a topic of conversation before it needed to be decided upon, and fast. As I journey through this experience of having an orphan disease, a rare one in a million tumor, I am learning that my doctors know about as much as I do about my diagnosis. I’m also certain that in this country, women’s health – their pain, their instinct, their voice – is taken less seriously, or at the very least, with less consideration, by those who have the power to make decisions.

If I could do it all over again, I would take the money and go on a trip. Spend five days in the islands or maybe Italy, and come back with a clear head and a tan, heartache-free, ready to put those chemicals in my veins. If I could do it all over again, I would have asked my doctor about possible risks to my fertility when IV chemo was first mentioned as a possibility last year.

If I could do it all over again, I would hold the hand of the girl in the purple sweater who sat in the thoracic surgeon’s office. I’d wipe her tears and tell her that yes, it is a sarcoma. That yes, it will hurt, more than you ever thought imaginable. But, your heart will continue to fold in on itself, shatter, repair, and expand in more ways you ever thought imaginable.

Yes, I’d say, your body may have failed you, tricked you, deceived you, and betrayed you. But your magnificent, beating, hurting, growing, divinely human heart is intact. It will amaze you.

Someday, years from now, if my tech-savvy thirteen-year-old is reading a cached version of this blog, simultaneously cringing at the faintest hint at my reproductive organs and beginning to simmer an argument about being unwanted, calm down. You were wanted: very much so, so much so that something huge and wildly transformational happened to change my mind. Go clean your room.

And if no child of mine ever reads this, or no child of mine ever exists, and it’s seventy-year-old Christina reading this on some futuristic device I can’t yet imagine, hello. I wonder what you would want to tell me. I wonder how your heart has grown.