First, happy breast cancer awareness month! I will have much more to say on how I feel about having a disease that has a month, color and yogurt devoted to it, but first I want to say something about my fertility treatment which has mercifully come to an end. I am not certain why but this seems to be one of the issues that is only talked about inside cancer circles and in hushed tones. I completely understand people keeping quiet on the topic, but for me it’s been one of the most difficult parts of my cancer experience so far and it has some of the furthest reaching impacts so it’s important for me to talk about it.
A few disclaimers before I begin: 1. I know how sensitive this topic is to many, many people, not just cancer patients. Trying to get pregnant, finding out you have fertility issues, being told you may never be able to have children, these are all scenarios that I could not imagine having to go through myself. I don’t want anything I say below to take away from what a difficult card that is to be dealt. 2. I am extremely grateful that I was given the opportunity to go through this. Believe it or not many young women are not even told that chemotherapy can impact their fertility. And some oncologists don’t give young women the chance to go through the process to harvest and freeze eggs or embryos before they begin treatment. Luckily I have a nurse navigator who is a young breast cancer survivor herself and who used to be a fertility nurse, so she gets it and she helped me get set up with treatment. So thank goodness for that.
Alright, so let me back it up a few steps. First, let me explain, if it wasn’t clear, that I have wanted children for as long as I can remember. My mother was training to be a mid-wife when I was little and I often found myself surrounded by pregnant women and babies. There has never been any doubt in my mind that it was something I wanted to do. Andrew and I had just not felt like the time was right yet, however. We have both been in school for ages and, most importantly, we have been very happy with our lives and felt that adding children to the mix could wait. We made unofficial plans to begin thinking about having kids in earnest in the fall of 2013. Hah! Plans shmans says life!
The first sign of trouble came when I was diagnosed with Graves Disease in June. Having Graves Disease, an autoimmune disease that causes hyperthyroidism, means you can’t get pregnant, not only because your hormones get all out of whack and your cycle goes crazy, but also because you need to be on anti-thyroid medications which can cause birth defects. When I first told my endocrinologist I would like to get pregnant in the near future he looked at me blankly and said: you’ll need to have radioactive iodine ablation before I would approve pregnancy. Basically that means that they would give me an iodine pill filled with enough radiation to completely eviscerate my thyroid. It would give me hypothyroidism (and a laundry list of other potential complications, including a 20% increase in my chances of getting cancer) but I could get pregnant. This “solution” infuriated me. The idea that I would destroy a part of my body that wasn’t even causing the problem (my thyroid was responding properly to signals from my broken immune system) seemed insane. It would also just give me another problem (hypothyroidism) for the rest of my life. And you end up being radioactive for days and have to stay away from small children. No thank you! It was all just not for me. I started researching natural cures and determined that through diet and lifestyle changes that I had a good chance of going into remission from Graves. In fact, 50% of people go into remission within a few years of diagnosis. The new plan was to eat right, go into remission and then get pregnant. So our timeline had already been pushed back a few years.
Then I got cancer. I didn’t even think about my fertility until I listened to a voice mail from my nurse navigator in which she explained all of the appointments she was setting up for me: nutritionist, genetic counselor, fitness doctor… oh and fertility doctor. My first response was to google everything there is to google about cancer and fertility, to briefly get upset and then to not deal with it at all until our appointment. This meant that when Andrew and I went in for our appointment with the fertility doctor I wasn’t at all prepared. I had never really known anyone that went through a fertility process (or it turns out I did but for good reasons they didn’t talk about it), I did not know what it involved, I didn’t know when it it would happen, or how, and how much freaking money it would cost (insurance companies consider it an elective procedure, even for cancer patients… thanks BlueCross!). Fortunately, my doctor, who herself had been diagnosed with breast cancer at a young age, was extremely helpful. She literally drew the process out on a piece of paper, from start to finish. And man was it complicated. And holy crap did it have to start soon.
The idea of IVF treatment for young cancer patients is that you go through the first half of a normal IVF process and collect the eggs, then you fertilize them (if you are lucky enough to have a caring and committed fertilizer in your life, otherwise you can freeze eggs which have somewhat lower chances of success) then you freeze them. Then, once you are cancer (and in my case Graves) free, you have them put back in (one at a time, no octo-mom crap). For each embryo you have a 60% chance of success so you want as many as you can get, which means the first half of the IVF process involves juicing up your ovaries so all the little follicles in there produce as many eggs as possible. You harvest a certain number, then usually a portion of those harvested eggs are actually mature enough to be fertilized, then only a portion of those are successfully fertilized and then you freeze those little suckers. I call them space babies, because this technology obviously comes straight out of Star Trek.
What did all of that practically mean for me and my life? Well, it started with a monitoring visit (ultrasound and blood work) on the first day of my cycle (aka period). Fortunately I got my period about two days later and we swung into full action immediately. After my first monitoring visit I received a bunch of drugs in the form of vials and syringes that I had to start injecting myself with daily. In the beginning I had monitoring visits every other day. This wouldn’t have been that bad but a good portion of these visits fell over my best friend’s wedding in Maine which meant that I had to drive an hour to the clinic every other day that we were there. This included one dramatic incident in which they told me the process wasn’t working and my hormones were out of whack, literally as I was about to go down the aisle, and made me drive in the day after the wedding on about 2 hours of sleep only to be greeted by a closed office because they had screwed up my appointment. Twelve hours of sleep, one nervous breakdown and one successful trip to an open office later and it turned out the scare was a false alarm… my hormones had leveled out and I was back on track. When I got home from Maine I started going to appointments every day. My doctor seemed nervous because my ovaries were not responding the way they should, which is apparently common in young cancer patients who, although usually fertile, are also being barraged with tests, procedures, surgeries, and ungodly amounts of stress that shockingly impact your body’s ability to create new life.
Towards the end of last week, however, things were looking up. They had increased all my doses, my follicles were responding accordingly and everything seemed to be working. The most common side effect from all of these injections and treatments is “bloating” so, while I wasn’t surprised when I woke up on Saturday morning looking and feeling like a beached whale, I was still pretty uncomfortable. They told me Saturday that I could take the “trigger shot” which is a final dose of hormones to send your ovaries into over drive. At this point they kept reassuring me that I had “a ton of follicles” and it looked like the procedure would be a success. I took the trigger shot at midnight on Saturday and the retrieval was planned for exactly 36 hours later in the middle of the day on Monday.
I went in for blood work on Sunday morning feeling bloated but otherwise good and then, on our way home, I went from uncomfortable and unable to button up my pants to: holy hell, this freaking hurts! For the second time in a week I was writhing on the couch in pain. For the ladies out there, imagine the bloating and pain that comes from your period. That’s the result of growing, ovulating and then flushing out one egg. So multiply that by about 50. Not.fun. Andrew finally called the nurse and she suggested I take one of the Vicodin I had left over from my medi-port placement. First Vicodin did the trick. The second Vicodin, however, might as well have been a children’s Tylenol. The pain got worse and worse until I was basically screaming and sobbing and at a complete loss for what to do. We called the nurse again and they sent me to the emergency room. Everyone kept saying that the only explanation that they could think of was that I had “a ton of follicles.” Once at the emergency room they luckily gave me a high priority which I assume was because of all of the blubbering, whimpering, sobbing show I put on for them. I was sent to a room in the back and after an hour or so finally saw a doctor. He was called Dr. White and befitting his name he was an angel sent from heaven to give me morphine. Finally, at about midnight, 24 hours after the trigger injection and 12 hours after the excruciating pain began, I got a bit of relief.
I would be remiss if I didn’t say here how awesome Andrew was through all of this. He rubbed my back when I thought I was going to explode, he got us organized and got me to the hospital, he put up with my pain-induced abuse, he found me a wheelchair and wheeled me in, stayed with me through pretty much everything and then sat in the chair outside my hospital room so I could sleep once I finally got the morphine. He’s a keeper that one. So glad I chose him to be the fertilizer of my space babies.
After an ultrasound which confirmed the problem: a crap load of follicles, I was discharged. We came home and slept for four hours before getting back up and going back into the hospital for the retrieval. The morphine thankfully held up until they knocked me out and took out all the space babies. For those who are curious about how this happens they do this with some kind of voodoo and a tiny needle through the vaginal wall so there is no scarring. When I came out of surgery it felt like horrible period cramping but it was much easier to handle. People started coming by my room to tell me how many eggs they had retrieved. “More than fifty!” my fertility doctor exclaimed. “Fifty or more” my anesthesiologist had said. “FIFTY TWO!” said my nurse with a giddy look in her eye. To put it in perspective most people hope to get about 20 but many get less than that. I had a whole deck of cards worth. Basically, that’s why it hurt so bad. I had a small army growing in my ovaries.
Today I got another call to tell me how many of my eggs were mature. Basically, if an egg is too small it’s not considered mature and won’t be able to make a proper embryo. It has to be around usually 18-20 micrometers (the width of a human hair) to be mature. Out of the 52 they retrieved, 24 were mature and another 7 had matured in the petri dishes after they had been taken out (science!). Of the 24 mature eggs, 20 had successfully been fertilized and frozen and we are still waiting to hear about the additional 7. So there you have it. Andrew and I have conceived at least 20 space babies in the last few days. This is basically more than enough for us to have at least one and probably even two or more successful pregnancies if we wanted (don’t get any lofty ideas mom!).
I am still in pain today. I still look like a beached whale in my first trimester. I guess it’s easy to say now that it was all worth it for my space babies. But quite frankly, it was a really hard experience. I went through all of this on top of getting all kinds of other tests and procedures done, including two minor surgeries. This weekend was my last weekend before I start chemo and I had been hoping to live it up a little more than spending the weekend unable to get off the couch and making a surprise trip to the emergency room. While in that emergency room there were plenty of moments where I cursed my situation and seriously questioned whether or not I have the stuff it takes to feel like shit and be put through the ringer like this for the next 6+ months. I still doubt that I do. But at least I have had one small victory.
One of the things that I said to Andrew while in the ER is that all of this is such a long process that it makes it pretty much impossible to see a light at the end of the tunnel. The tunnel is just too damn long. The road is too winding and rocky. But my space babies have given me a small ray of hope. Someday I hope I will have the opportunity to create life and that it will make up for all of the destruction that I am about to endure.