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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.


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A pile of my discarded medical waste from fertility treatments.

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.

Uncategorized

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.


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.

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The contents of my fridge: raspberry preserves, quinoa, almond milk, spinach, eggs – and three bags of fertility medication.

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.

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You know the saying: another openin’, another show, another injection.
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The beard really completes the look.

 

 

 

 

 

 

 

 

 

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.


To be continued.

experience, treatment

Unspoken: Part 1.

This post is the first in the 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.


 

crisis
Image of the sign borrowed from ABC20

There’s a small sign that hangs in my office at school that my coworker was gifted years ago. It reads, “just take it one gigantic, earth-shattering crisis at a time.” I love that sign. It’s honest, isn’t it? Because life doesn’t usually hand us challenges in neat packages. Instead, you get something akin to those Russian nesting dolls. You think you’ve tackled your problems, but as you unpack it and delve deeper, you reveal more and more than you saw upon first sight.

In the middle of March, I was prepared for the start of IV chemo. What I didn’t expect was the life-changing decision I’d have to make before it even began.

The day I agreed to start Doxorubicin is a bit of a blur. Thankfully, I had done my homework on the drug, so as my oncologist rolled through the list of side effects during our appointment, I simply nodded in understanding. I knew that fatigue was the biggest side effect, as well as hand and food syndrome, lack of appetite, nausea, and mouth sores. Check, check, check, check, and check.

I paused when he mentioned there were other, less common side effects that I’d need to sign off on. I was handed a plastic electronic pen with which to sign a consent form. This digital consent form was my acknowledgment that, among other things, there is a small but real chance that my monthly infusions could leave me with leukemia, send me into early menopause, or eliminate my fertility. My oncologist recommended in the next breath that I set up an appointment for a fertility consultation. A nurse from the sarcoma program would coordinate with the fertility office and call me to schedule.

I took a deep breath. I signed.

The next day, while in a tech rehearsal for the musical I was choreographing, I received a phone call from the nurse. The fertility clinic couldn’t see me until April, which would be pointless, as any fertility treatments needed to conclude prior to the start of my treatments. Luckily, there was likely to be a cancellation the next day so I could be seen- provided I could call and confirm in the next fifteen minutes before the end of business hours. I did, sent a text to my mom asking her to accompany me the next day, and quickly shot off a flurry of emails to find a sub for my classes.

As rehearsal continued, I sat and struggled to make sense of what just happened. I googled the cost of egg freezing, the process through which my future fertility would be more possibly secured. I tore through the desmoid tumor patient facebook group, searching for the terms fertility and egg freezing.  I got a vague understanding that this consultation would need to be the start of a much longer, much more involved process than I had anticipated. The weight of this decision slowly settled in.

While this may seem like a cut and dry decision of whether or not to freeze my eggs, there’s something you need to understand about desmoid tumors. Scientists have no idea what causes them, but there is some evidence to suggest that they’re hormonally driven. My own tumor tested positive for estrogen receptors, which indicates that any change or increase in hormonal activity gives the tumor a chance to grow. It’s a common subject of discussion on the desmoid facebook group. Many women shared that their tumor grew exponentially during pregnancy, presumably both from the change in hormones and the inability to treat the tumor while carrying a baby. An article was just published on March 20 of this year with the partial title “Bedouin woman with a dormant neck nodule that grew explosively during her pregnancy.” And while the risk of infertility after this round of chemo was small, I already had this rare disease, this one in a million tumor. A 1% chance of something going wrong had already proven itself 100% possible.

Was I willing to freeze these eggs if even carrying a pregnancy would be that risky? Every woman whose tumor had grown said they wouldn’t change a thing because it meant they had their beautiful baby, but I couldn’t imagine needing to undergo more intense treatment immediately after giving birth to a child. Surrogacy was another option if I wanted a biological child, but with a teacher’s salary, the $70,000 – $100,000 price tag seemed unattainable, especially when adoption was something I would be willing to consider. And then the deeper question: was motherhood something I even wanted? I never had that deep, unflinching “yes, absolutely” when asked if I wanted kids someday that so many people I know carried with them, as certain as their own name. I didn’t worry too much about it, especially since I wasn’t in a relationship, and I was 29. Wasn’t there time to think this all through?

It turns out, I had even less time than I thought. Treatments take several weeks. I would need to begin immediately.

I had 19 hours to make a decision on whether or not I wanted a biological child, and if so, how much I was willing to pay for it. Because while it was a side effect of my necessary chemotherapy treatment, insurance wouldn’t cover a dime.

With exasperation and fury, I remarked to someone that it felt like a bad crossover season of The Handmaid’s Tale and 24. I could barely see past the start date for chemo. How on earth was I supposed to make a level-headed decision about the rest of my life? I paced back and forth across my living room floor, unable to sit down, frantically searching for the right decision.

This is the unspoken battle of any life-altering diagnosis: it robs you completely and utterly of any sense of security. I cried more in those 19 hours than I had in the year since my diagnosis. Grief is not relegated to death, at its core, it is the deep and painful acknowledgment of loss. At 29, I was grieving the loss of a life I thought I would have all over again. Any sense of freedom is derived from having agency and choice, and I was watching my choices disappear behind variables, side effects, life events I couldn’t predict, and dollar signs. I wondered how much more my heart could continue to break and repair itself.


To be continued.