The Uncomfortable Post: Cancer and Fertility

Three months ago today, I found out I had cancer. This past Saturday, I underwent a procedure to retrieve my eggs for fertility preservation. It’s been a long, very humbling, humiliating and vulnerable journey. I wasn’t sure if I was going to write about it because it’s so personal, but I set out on this blog to bring people with me on the journey, and this is part of it. Also, when I was looking around out there for anyone with a similar story that could help me figure out what decisions I would make, there was radio silence. So in doing this, I'm breaking that silence, in hopes that someone like me will read this and feel like they're not alone.

After my experiences living in New Orleans for the last 18 years and experiencing women's healthcare in Louisiana, I'd venture that it's unlikely a single woman over 35 would be given the option to preserve her eggs in my situation, because in the South, her ship has pretty much sailed. In Boston, it isn’t strange. Plenty of career women choose to wait to have kids until later, and it's seen as choice, not as a failure to have had them earlier. When I made jokes about being too old during the IVF process, they all looked at me quizzically and said “well, you’re not old here.”

When I first spoke to TeamBewb in Boston, on that first marathon day of appointments, they mentioned preserving my fertility, and that after the cancer treatments, the natural route would be a no-go because if there weren't enough damage to the eggs from all the chemo/radiation/hormone therapy, I'd be in my early 40s by the time my eggs were back to normal, and that's when the chances of birth defects skyrocket. The doctors at MGH said that with cancer, sometimes health insurance will cover it, so I asked a Humana. After a few weeks of back and forth and mixed messages, I found out that they indeed do not cover it, so I was going to be out of pocket for this if I wanted to go ahead with it, to the tune of nearly $15K. I was heartbroken. I couldn't afford $15K for a small sliver of hope. How could I spend the money on this when there are so many other things I need to spend money on throughout this process? Who am I kidding, thinking that I'll have a kid in my late 30s after cancer?

(Enjoy some adorable dancing eggs to break up the awkwardness.)

The Cruelty of Cancer

Cancer does a lot of things to you. It makes you scared. It makes you vulnerable. It makes you learn a whole new language of chemistry and medicine. It takes you away from the life you had the day before you found out it was a possibility, and makes you laugh at how simple that life was.

Cancer takes your crushes, your flirtations, your interest in relationships, and throws them right out the window. It makes you think that sure, maybe when you’re done with the cancer process you can find someone who can deal with it and with you, but in the eyes of any of those people you were talking to, you just went from potential mate to cancer patient.

Cancer takes parts of your body that you used to celebrate and flaunt, and in a way, it removes them from you until you feel like you are separate from your body. This flesh suit is something that pains you–something you are treating. Your breasts are no longer sexy; they're risky and vulnerable and will forever haunt you with the potential of recurrence (and that's if, like me, you're fortunate enough to be able to keep most of them). Your heart is no longer something poetic; it a muscle that hurts you, physically sometimes when the procedures go wrong. It's something that you fear will fail you, and you think how cruel it would be to invest all this time in getting better from cancer only to have a heart attack. And it's improbable, but then again, so was getting cancer, so the fear is always back there, lurking.

Cancer rips the scab off of any old wounds and any insecurities, and it exploits them. All of them. The things that you have never told anyone you were afraid or ashamed of, you find them suddenly splayed open on a table, the focal point for a team of clinicians.

Insecurities about my appearance? Check. Shame for my weight? Check.

Adult acne? Oh yeah, that's back. Check.

Shame for still being single? Check.

Fear of losing my hair? Check.

Fear of wisdom teeth removal? Check. The week I was diagnosed.

Guilt for being away from my dog? Check.

Worry about being away from my house? Check.

Worry about slipping behind at my job? Check.

Financial insecurities? Check.

Fear of other health problems? Check.

Exposing my home to strangers to help me with things? Check.

Feeling of failure for having to move in with my parents? Check.

Guilt for relying on friends for housing during treatment? Check.

Horror at having to ask people for help? Check. Check. Check.

Fear of losing the independence I've so fiercely fought for? Check.

Age? Check.

Ability to have Kids? Check.

These last two, these are the ones I'm talking about today. And bear with me if I ramble, because I don't readily cut this deep and show my wounds, and this might be one of the hardest things I've ever written.

The last appointment with TeamBewb before I came home to New Orleans was the one where they told me about what kind of chemo I'll have and led me through what was to come. I was prepped by the pharmacist about what to know and what to do and how it would all go, and then they asked me one last time: do you want to talk to the fertility specialist who helps women with cancer?

"Yes."

Even saying the word was admitting that I wanted something I don't admit to people.

I've worked hard to be my own person: self-reliant, happy with who she is, in control of her whole life. I used to scoff at friends in our twenties who got all baby-crazy and whined about being a mommy and who cooed and baby-talked to kids like they were little cartoons. I was never that kind of person. Kids in general tend to make me a bit nervous. Working in retail for years, I have seen the worst of the worst. I see terrible things going on in the world and think I don't need to add to the mess.

I spent my twenties doing my damndest to *not* become a parent, with all the trials and scares of a modern young single woman, so when it came to my mid-30s, I was shocked when I all of a sudden realized that the window of opportunity was closing and there was a kind of pang. Not a "my life will be over if I don't make a person" feeling, but a kind of sadness. It was mourning the loss of someone I never got to become, and of the awesome little person that I could create. I would have been so good at this.

I have had pleasant recurring dreams of the same little girl, with brown ringlets in a blue gingham dress, since I was in my teens, and I kind of accepted that this would be my someday-kid. I always thought I would have one biological child and then adopt their sibling. The relationship would, of course, come first. Life, however, got in the way.

In my mid-20s, right when I might have otherwise been getting more serious about things, a little storm happened called Hurricane Katrina, that put my life on hold and then in recovery mode for about 5 years. I had one serious relationship off and on throughout some of those years. We talked about having kids and how he'd be the stay-at-home dad while I worked, and then in 2010, he passed away suddenly and I was gutted. I couldn't even comprehend dating anyone for several years, so I focused on myself. I was diagnosed with PCOS and began to learn how to manage it. I got my sweet pup Phosphor in 2011 and I bought my house in 2013, then spent every second fixing it up and making it a place where Phosphor and I could live comfortably, and where someday Mr. Tall, Dark and Nerdy would join us. Then I left my job of 16 years in 2015 and started a new career in marketing, which I threw myself into.

Suddenly, I blinked and I was over 35, and I was doing everything I could for myself–the house, the car, the job, traveling, taking care of my health–but I had kind of stopped going out and meeting people. I was single and my window for having kids was statistically creaking shut, and I couldn't do that on my own. I started making an effort and going out more, made a plan to expand the space in the house to accommodate another person (insert bad "if you build it, they will come" joke here), and was gearing up for a good spring. I've been kind of insecure about being single for so long, but it's due in large part to a series of unavoidable tragedies and me trying to deal with them alone. I got used to dealing with them alone, and then would isolate when I was vulnerable and damaged so I could "fix myself" and come out again when I deemed myself better.

I found myself in my late 30s, feeling like I'd had about 8 years of my life stolen from me. During the years that my friends around the country were meeting people and getting married and starting families, I was recovering from Hurricane Katrina and from the death of the guy I thought could be my future. I felt about 8 years behind all of them, realizing that if I wanted what I wanted, the clock was ticking. And I hated that feeling because I was always the girl who didn't need no man and scorned the girls with "baby rabies." And there I was, quietly sad. Worried. But not ever admitting it to anyone because the emotions were a betrayal of everything I ever believed in for myself.

Then one day in December I grabbed my boobs and found a lump, and there we were three months later, sitting in a gown with strangers, discussing my fertility options, getting examined and tested and meeting with an entirely new team, different from the cancer team. And there was something there: a little bit of hope–a little bit of "maybe something good will come of this." Maybe even a couple more years before that window was closed.

I found myself liking the idea a little too much, and when Humana said I could appeal and that they sometimes covered it, I got my hopes up and became invested in the process. Then Humana declined it, much to the horror of everyone at Mass General Hospital. ("If you were a Massachusetts resident, coverage wouldn't even be a question. How can they treat you like this in Lousiana?!")

But my heart was already in it. I had to do it. MGH helped me find some funding through some cancer funds as well as Livestrong, so my part would be "only" $5300. So I took a deep breath and I put it on my credit card and they called in the first prescriptions the day before I left New Orleans to come back up north for the rest of my cancer treatment.

For the last two weeks, I've been staying at my friends' house with their family, who were absolutely kind and lovely to open their home to me, and who are about the best company you could be around. Their kids are incredibly intelligent and the whole family is super down-to-earth. It's an odd experience being around such a cool family while you're going through all kinds of heroics in an attempt to one day have your own. Good news: Phosphor has decided that he adores kids. Loves 'em. They hang all over him and he just wiggles and glows. So there's that. Sweet pupper.

See how nice that was? Now here's the messy part.

The Egg Preservation Roller Coaster.

If you ever hear of someone going through IVF, please be kind to them. This process is not for the faint of heart. There are multiple daily self-injections and ultrasounds (yeah, that kind) and the physical effects of the process are insane. They made me drop 20 lbs in a month to get ready for it, so I had to kick the thing off with a crazy diet. I've been carrying around a huge bag full of injectables and have had to learn how to reconstitute multiple vials of dehydrated powders with a series of needles and syringes and adapters, and get them all into one syringe and switch out the big needle for a smaller one, then find a new spot and inject it into the skin of my stomach, belly button or lower. I've been doing so many every day that I've run out of fresh spots, and now I'm basically aiming for someplace near one of the more-faded polka dots.

This is what I've been dealing with:

I get up at 5:45 every day to shower and leave the house by 6:30 and fight through Boston morning commuter traffic to get to the appointment on-time. I have the increasingly uncomfortable/painful ultrasounds as the follicles get bigger in there, and then they take loads of blood, and then if I have any other appointments on the cancer floor, I go there. Every afternoon the nurse calls me and tells me how much of which drugs I'm to be injecting myself with over the next day or two, and if I have to come in again the next morning or if I can have a day off.

I've been on blood thinners for weeks because all the hormones and things put you at a high risk for clots, and they forgot to tell me to stop them when my regular cycle started. I'm not going to go into the details of that, but the word horrifying could be used.

I've been headachey, exhausted, unable to sleep, dizzy, ravenous, nauseous, swollen, painfully crampy, and have had reflux so bad it feels like lava. And then of course I got food poisoning from some bad chicken salad in the middle of it all, and on Sunday morning after being up all night horribly ill, I still had to pop a Tylenol for the fever and then load myself into my car with some crackers and a plastic bag in case I threw up on the way in, and get yet another ultrasound and blood draw.

At the end of this self-injection and professional violation tornado, 36 hours before the egg retrieval surgery, they had me mix up yet another concoction using four different vials, then inject it with a massively long, thick needle deeply into the muscle in my right hip.

That. was. not. fun.

Before retrieval, they I had 18 follicles, each ranging between 13-20mm each, which was an excellent result, but which also meant that my poor, unprepared lady bits were essentially stuffed with bags of grapes, and I could feel their pressure when I was just sitting in a chair.

After the retrieval, they said they got 22. And I felt run over by a truck. Turns out I have Ovarian HyperStimulation Syndrome, which happens in women with PCOS who had a “very successful” cycle resulting in a whole ton of eggs like mine. When I was looking for a way to illustrate it, I found this one that I think is Taiwanese:

Adorable, right? Again, I’ll spare you the gory details, but let’s just say it’s about as fun as this illustration makes it look.

Throughout this whole process, I have felt like I couldn't vent or complain because after all, I chose to make this happen. I put $5300 on a credit card for it and found funding for the rest. How can I complain when this didn't have to be part of my cancer journey? I opted in. It was my fault. I would be selfish to whinge about something that I was privileged enough to take advantage of. So I didn't really say anything. I suffered in silence.

Even though I’m among wonderful friends and loved ones, especially this lovely family that’s hosting me, this whole thing has been a really isolating experience. The other women I see at MGH who show up like me every morning are doing it with their partners. I come in every day alone. They're coming in, hoping to make a family together. I'm coming in just trying to save some hope in the midst of cancer. And because it's girl-stuff, I felt like couldn't share. Couldn't complain.

Feminine healthcare and fertility comes with such a hush around it. You don't talk about reproduction. It’s senseless and unfair, but somehow women taking control of their own health & reproduction is socially kind of icky, when it should be empowering. And when you’re going through it, you feel alone and somehow ashamed for being so selfish as to do this on your own. Like this is your own damn fault because you failed to do it earlier.

I've felt guilt for allowing it to postpone chemo for a couple of weeks. I've felt silly and desperate for being too old. When they suggested creating embryos in the beginning, I was horrified. I was not ready to sadly look through a book of donor-daddies, picking out the best features. I was not ready to give up hope of meeting Mr Tall, Dark & Nerdy and having him be the other part of my process. I wasn't ready to commit to going it alone for the rest of my life. So I opted for just the eggs.

Part of it is clinging onto hope. Part of it is delaying something that I simply can't deal with right now. Part of it is the fact that I had a plan, damnit, and I make my plans happen.

One of ours. One that we would adopt.

Yes, I still have to meet the dude, but I suppose at least now when I meet him, there will be a little less pressure, and we'll have a couple more options. And if he sticks with me even after he learns about the adventures of #TeamBewb, and reads this blog (mortifying idea even right now) then I guess maybe he'll be worth thawing out some Katesicles.