Fertility
Me and my friend before an ultrasound.
I want to preface this post by saying that I am aware that many women are dealing with fertility issues far more complicated than mine. Over the past two years, I’ve watched many of my friends struggle to start families. It’s heartbreaking. My story is the tiniest fraction of what my friends have endured. I am in no way comparing myself to all of the women who are going through extreme obstacles, trauma and pain. I’m just sharing what’s happening to me as it relates to my big picture. So to all the mamas and mamas-to-be out there – thanks for not giving up, thanks for paving the way and thanks for teaching us from your experiences!
I’ve wanted to be a mom for as long as I can remember. I think my 16 year-old self would be appalled that I’m over 30, unmarried and without child.
But that’s the way my cookie has crumbled!
Without going through a play by play of my dating history and mistakes, I simply found the right person later in life than many of my contemporaries.
I was already feeling the pressure of marriage and children before my father’s cancer diagnosis. It was self-inflicted pressure. I wanted love just like everyone else but also wanted to give my parents peace of mind and all of the typical experiences parents look forward to. My youngest brother’s death heightened a lot of these feelings – I wanted to give my parents happy moments. I was the only one left to give them the pleasure of throwing a wedding and becoming grandparents.
So when I was 30 and found out I was BRCA1 positive, it was a bit of a wakeup call. To explain, I might be helpful to share the below stats.
1. Women with the BRCA1 mutation have a higher risk of 60 – 80% for breast cancer
2. Women with the BRCA1 mutation have a higher risk of 20 – 45% for ovarian cancer
3. Women with the BRCA1 mutation are advised it is best to have their ovaries removed by their early 40s
All three of these points caused me angst because:
1. If I was diagnosed with breast cancer before I had children and needed chemo, this could wipe out my remaining egg count.
2. If I was diagnosed with ovarian cancer before I had children, I would no longer be able to carry a child.
3. Even if I didn’t develop cancer in my childbearing years, I still needed to have children before I turned 40 to ensure I did not put myself at a higher risk.
Some might say they hear their biological clock ticking. Well, I felt like a ticking time bomb. I was single and I didn’t know why anyone would want to be with me under these circumstances. And also, who knows if I’m fertile to begin with! At that point, I was living in Philadelphia, trying to date & make more friends, coming to the end of a temp role and on Cobra insurance. It was a low point. But with encouragement from my mom and dad, who we believed to be in remission, I decided I needed to move back to New York to get back my life and maybe find love too.
About six months later, in the spring of 2017, I was settled in New York, dating a lot but not necessarily finding the one, and started to take the steps I needed to preserve my fertility and have my eggs frozen.
It took some time to build confidence to make an appointment with Reproductive Medical Associates (RMA) of NY – it’s intimidating to be so vulnerable to a brand new doctor about your hypothetical future family that you need help creating! I learned quite quickly how relatively easy it was to start a cycle but how expensive egg freezing is and that my chances were slim for insurance to chip in. I knew it was going to be a challenge to explain my situation and also keep my emotions in check. I’ve always had a hard time defending myself and fighting back after hearing no for the first time. So after repeated inquiries (that peaked my anxiety) and providing justifications for why egg freezing should be covered, because of reasons #1, 2 & 3 above, I eventually received confirmation that my insurance company would be willing to cover one cycle because of my mutation and risk.
Funny part is that after I finally received approval, I had started dating someone and that confused me even more – could this be something and how do I explain my situation? That short-lived relationship didn’t work out in the end. Embarrassingly enough, I over-served myself on the night I planned to tell him about my genetic predisposition as well as my impending fertility cycle. I wish I could remember how the conversation went (or if it even happened) but, regardless, he ghosted me… right when I started my hormones.
A lot of people ask me about the actual timeline so here is my abbreviated version in laymen’s terms (for the record, I am not a doctor and this is not how it is for everyone and I’m not providing the exact medications/hormones and their scientific uses):
1. You need to be on the pill so you can control your period/ovulation. I’ve been on the pill since I was 17 so that was no problem for me. You just go off of it when you are ready with your medications, doctors approval, etc. First day of your period is “Day 1”
2. You go in for your first monitoring appointment (ultra sound & blood work) approximately 3 days after your period to make sure everything is looking ok – follicles, lining, etc. and that night you take your first medications in injection form, pending all is good.
3. For about 3* days you take one injection in the morning and then one in the evening – going into the office about every other day or every 3 days for monitoring.
4. For another 4 – 5* days you add on another injection in the evening – going into the office about every 3 days for monitoring.
5. When the doctors think your follicles are ready, they schedule the trigger shot which is taken 36 hours before egg retrieval.
6. You are put under anesthesia for retrieval and it lasts about 15 minutes.
7. You find out the day after how many mature eggs are able to be preserved.
*Number of days varies for each patient
While it was so weird at first, I quickly got the hang of administering my shots. The first one I gave myself was in front of my parents and they were hysterical – both laughing and yelling at me because I gave myself a couple pricks first to see how it felt. My dad tried to convince me that he would give it to me but I hesitated. I needed to be a grown up and do it on my own. After I finally did it, I yelled “that didn’t hurt at all!” and my dad got a kick out of it.
One of the major issues for me during the time leading up to the retrieval is that you can’t do many work outs because of how it could affect your ovaries as they are churning up those eggs. For example, no intense cardio, no twisting, no inverse moves – really everything I do. In an effort to create balance, I didn’t drink during the time frame which baffled my mother.
Overall, I didn’t think I showed a lot of the common side effects including mood swings, headaches, etc. but my friends and family may beg to differ. The biggest side effects were extreme bloating (growing ovaries and eggs) and bruising from bloodwork and injections.
Retrieval day came before I knew it. Going into this, the doctors were seeing great progress and there was no sign for warning. My AMH level before starting the cycle was good – I think maybe 2.75 – and they were hopeful I would hit the average number of eggs – around 10. To me, this was my insurance policy on my fertility future and I never doubted it would work.
It wasn’t until I was trying to stop my jitters in the dressing room before the procedure that it hit me. A woman next to me, who was also a patient, saw I was nervous and kindly asked if it was my first time. I replied yes and she went on to reassure me that it was all painless and wished me the best of luck. This is going to sound so naïve but it wasn’t until after that encounter that I thought this might not work out. Don’t get me wrong, I was warned and read all of the fine print, signing each and every release saying this process could be a failure. I’m a big believer in accountability. But I just kept thinking about how great an opportunity this was. It felt like I was accomplishing a huge personal challenge – yet I didn’t think about the whole picture. This is just the first step of a full IVF process and there are women who need to do egg retrievals over and over again. Just because I wasn’t going to be fertilizing this egg right away didn’t mean my chances were higher.
As you can guess, I didn’t get the results that I hoped for. My doctor called me the day after and told me she was disappointed to share that only four of the seven retrieved were mature and viable. I was actually devastated. It felt like a huge miss and on top of it, they couldn’t give me a reason for why – everything was on par; the bloodwork, my follicle size, my age, my AMH. But that’s a woman’s body. It’s really up to chance and the cycle. I eventually moved on and from the disappointment and was grateful for the four eggs that I had. I put my focus on the present rather than the future.
Now it’s almost two years later and we are at a new crossroads. Not only I am still mourning the fact that I didn’t give my dad the memories I wanted to, but now I have cancer too! Would I even be able to have those memories for myself? When chemo was first mentioned, I felt defeated. Would I be able to carry a child? This was my biggest fear coming to life.
My breast surgeon at MSK made fertility a priority and ensured me that we could do an egg retrieval cycle before or after chemo. Luckily for me, insurance would partially cover the claim – minus medications.
We decided to do my cycle leading up to my double mastectomy for two reasons:
1. My results weren’t great the first time around so if that happens this time, I could do it again after surgery and before chemo.
2. Praying #1 isn’t the case, I wouldn’t feel like doing a cycle while I’m recovering from surgery.
So here we are getting pumped up with hormones once again. It’s been an interesting second round. Given my history – oh and my new lower AMH level of 0.93 – my doses are higher. Let’s just say I am showing all of the standard side effects. I am so much more tired. I get awful headaches and I have not wanted to schedule anything after the hour of 5pm. I am moody.
But there are good things. I’m learning more about my body. I am able to manage expectations based on the past. But the best part is that I have a partner this time around. David doesn’t want to give me the shots – I don’t blame him – but he does support me and reminds me that our hypothetical children will be thankful for all of the hard work we are putting in.
He reminded me the other day of a memory I completely forgot about. It was our fourth date. He made plans for us to visit the Rubin Museum in Chelsea followed by dinner in the neighborhood. I brought him to one of my favorite dive bars after dinner – Peter McManus – and then we went down to Tribeca near my apartment to another favorite bar – Belle Reve. There, after a few cocktails (but not too many) I told him I had a genetic mutation that causes an increased risk in breast and ovarian cancer and I have to have kids by the time I’m 40. I didn’t just want to play around. I was looking for a partner in life and I hoped maybe that could be him.
What I didn’t know is that he called his friend the next day, sharing what I told him, and then said, “she is either completely crazy or the most normal girl I’ve ever dated. She is it.”
So life has a funny way of working out. Time will always tell!
I’m due for my egg retrieval tomorrow and while I know I’m not going to hit the “average” number of eggs, I have hope. It’s hard to talk about because we aren’t ready to try now – and medically speaking we can’t. We don’t know what will happen when we implant the embryos down the road. I’m just doing my due diligence and am aware that it might not work out when we are ready but whatever happens, we will figure it out then. And yes, easier said than done.
Will keep you posted! Pic below of my follicles on 4/10.
