Is this decision going to kill me?
This is something that I have thought about every day for the last 6 months. I've had this thought several times before in life, usually before embarking on some daring or possibly stupid adventure, but it's not something I ever thought I'd have to think about before having a child. If you watched my 2014 video in my
last blog post, you know that I'm pregnant and David and I are expecting our first child in July. While this is extremely exciting news and something we had planned for, given the fact that I have brain cancer this was a very difficult decision and not one to be taken lightly.
Planning Ahead
Back when I was
diagnosed with brain cancer in September of 2012 I found out that I would have to go through chemo for a little over a year, and one of the first things I thought of was what effect this would have on my fertility. I had learned earlier that year that chemo could ruin your chances of conceiving a healthy baby naturally, and I immediately asked my neurosurgeon, neurooncologist, and endocrinologist what I could do to save my chances. None of those doctors ended up pointing me in the right direction, but I was fortunate enough that the social worker who was assigned to my case got me in contact with the
fertility specialists at UCSD and within a matter of days I was beginning the process of
emergency fertility preservation.
How I Picture My Eggs
I was very fortunate because the timing *just* worked for me and we were able to go through a round of IVF, harvest eggs, and create embryos all between the time that I had brain surgery and then started radiation and chemo. I've heard so many tales of women who just didn't have the time to pursue that option, and I am so grateful that I did. The process went relatively quickly and smoothly and honestly wouldn't have happened without the majority of the procedure being covered by
Livestrong and
Walgreens and the financial help of my parents.
Talking About Baby
While I was going through chemo I had talked to my neurooncologist about wanting to have a baby. He said it was standard to wait at least six months after the completion of chemo to allow for the chemicals to fully leave your system, so since I finished chemo in December 2013 we knew that the earliest we could try to have a baby would be June 2014. In March of 2014 we had an early visit with a perinatologist (high risk pregnancy OB/GYN) at UCSD and she went over the sobering reality of getting pregnant with brain cancer.
My OB performed a literature search and was only able to find one paper at that time that discussed the clinical effects of pregnancy on the tumor. While it was theorized that being pregnant could likely cause the tumor to grow or worsen, there wasn't much data out there since the majority of brain cancer patients aren't of childbearing age. In the paper that she found which followed a group of eight women, half of the women's cancer progressed and the other half didn't. We had to decide if a possible 50% chance of progression was worth it, and whether or not we wanted to try to get pregnant. Worse than that we had to discuss all of the options we'd have to consider if my tumor did start to progress during my pregnancy. None of these options were great. All were terrible.
David and I talked about the situation and our options for months. We had considered using a surrogate in the past, but honestly it just wasn't financially feasible. We talked to an agency who helps a lot of cancer patients and found out that we'd need to plan to spend $80-100K on a surrogate between agency fees, medical costs, legal fees, etc. We just don't have that kind of money and borrowing it didn't seem like the right choice for our financial future. Also, I honestly just wanted to have a chance to carry a child myself and experience what it was like to be pregnant. This was a really difficult decision to come to, but we decided to go ahead and try for a pregnancy.
Starting the Process
After deciding that we would go ahead with me getting pregnant, things moved pretty quickly. As a "planner" the thing I loved about IVF was that we'd get to pick the implantation date and the resulting birth date (roughly) of our child. We decided to go ahead with the implantation in early November which worked out for a number of reasons - David's brother was getting married in May and this would allow me to still fly cross-country to their wedding, we'd have several more months to save enough money to try more than one round of implantations, and coincidentally this worked out really well with my travel schedule which is really heavy between January and June of each year, with one trip in October and then nothing again until January. Granted if this first implantation didn't work out then the timing with my travel wouldn't be quite as ideal, but fortunately it did!
Estrogen Patches - the Beginning of It All
We started the process in September with a round of testing to make sure I was ready to have a baby. In October I started estrogen patches to increase my estrogen levels, and in November I started progesterone shots to increase those levels as well. Um the shots are in the hip with a giant needle, and were every night for eight weeks. I was basically a tenderized steak by the time we finished, but hey, all for the greater good.
Shots, Shots, and Shots
My Last Distance Race Until I'm a Mom!
With my Neurosurgeon at Over the Edge for Brain Cancer
The initial paperwork that the fertility clinic gave me when we were starting the process also included recommendations on acupuncture, and after a little research I was impressed to find out that acupuncture was shown to increase frozen embryo transfer success rates by 60%. I found a provider that was a short walk from my office and started treatment two weeks before implantation, had a session immediately before and after the implantation, and continued through the first trimester. Was this cheap? No. But it was thousands cheaper than a second attempt at a transfer.
Channeling My Inner Pin Cushion
After the transfer (which by the way was an extremely awkward procedure) I was on STRICT bed rest for 48 hours, and couldn't exercise for the next four weeks. If you know me, you know that I was going out of my mind. Those 48 hours were difficult, but not working out for so long afterwards was maddening. Again, it was all for a greater good though, and on December 1st we found out that I was pregnant! 4 weeks and 2 days. :o) I had prayed intensely in the weeks leading up to this appointment that God wouldn't let me get pregnant unless it wouldn't negatively affect my tumor, and I really hope that ends up being true.
Thanksgiving 5K - Walking for the First Time!
First Trimester
We were able to see the baby's heartbeat in that first ultrasound, and we've seen the baby progress from a little blob, to a gummy bear, and to a tiny baby. It's truly amazing to see the miracle of life forming inside your own body. Towards the end of December I had my quarterly visit with my neurooncologist, and for the first time didn't have a MRI. We decided that the risks didn't outweigh the benefits and that we'd put off having a MRI potentially until my third trimester. It was unnerving to think that so much time would pass between one MRI and another, but we decided it was best for the baby.
Our Little Gummy Bear at 8 Weeks
I've had a thyroid disorder for 16 years now and my thyroid has been chronically unstable which is rare so far out from diagnosis. My endocrinologist has told me before that I'm in the top 5% of most difficult patients to treat he has ever seen. Aww, I'm so special! Pregnancy typically affects your thyroid when you are pregnant and I was no exception, although my thyroid reacted more erratically than my doctors expected. Soon after becoming pregnant I went from stable to extremely hypothyroid, and as my medication was adjusted a few weeks at a time my thyroid levels were bouncing around all over the place. Aside from gaining a few extra pounds from all this (boo hoo) I was also really concerned about the baby since miscarriage and developmental problems can occur from an uncontrolled thyroid disorder. Fortunately we got everything under control after a month or so and I'm stable now, although I'm getting blood tests every 2-3 weeks which is much more frequent than most patients.
Undercover Pregnant Heading to Our Friend's Holiday Wine Party
My Decorated Wine Bottle Was Pretty Awesome!
(... but didn't win the contest...)
In December David and I went home to SF for my 20 year high school reunion (yes I'm old...) and when trying on dresses I was shocked to find out that I was already showing. At 8 weeks! It might have been bloating but I had a little stomach that came and went throughout the month, and sadly at 10 weeks I had to give in and buy maternity jeans. Stretchy waistbands have become my new best friend.
Mini Bump at 8 Weeks
20 Year Reunion - 94 In Tha House!
Hello Maternity Jeans
Later in December we also went through a series of extensive genetic tests since I am 36 and considered a high risk pregnancy. (As if having cancer and a barely controlled thyroid disorder weren't bad enough.) My eggs were technically harvested when I was 34 so the genetic counselor gave us the option to skip the testing, but we decided why not, lets just be cautious. Fortunately everything came back okay and we passed one stressful obstacle.
12 weeks in January
But now back to my own health ... A few days before I saw my OB late in the first trimester I read a blog post from a fellow young female brain cancer patient who had made the difficult decision not to have children because of her diagnosis. She had done extensive research on the topic and her and her husband had decided that it just wasn't worth the risk. She cited several papers showing the connection between brain tumor progression and pregnancy, and now several months into my own pregnancy I was terrified that we had made the wrong decision. I sent the articles she referenced to my OB and my neurooncologist to get their opinion. At this point I wasn't ready to end the pregnancy for no reason, but I was really worried that I was headed for doom. My neurooncologist countered with another paper that he had found in his recent search that showed another small group of women who had mostly positive outcomes, and told me "The short answer is that we don't know exactly what pregnancy will do for a low grade glioma. There is even less data/case reports for brainstem gliomas, which are genetically different from other low grade gliomas. The problem with case reports is people often report only the bad outcomes. You can see from this study below that many pregnancies are uneventful. We can certainly do an MRI without contrast if you are concerned. I will talk to your OB about this as well."
Our Baby at 18 Weeks - Enjoying a Cold One
Second Trimester
After discussing the situation with my OB the next time we saw her, we decided to go ahead with a MRI without contrast during week 22, giving David and I enough time to make a decision on how to proceed before we ran out of options. The weeks leading up to my MRI were stressful. I tried not to think about a potential bad outcome as much as possible, and did a fairly good job of staying calm until the day before my MRI when they called me to confirm the appointment. I felt like throwing up the minute I heard them utter the word "MRI" over the phone, but luckily I was able to calm down and not stress too much.
I had my most recent MRI at the end of March. I was 22 weeks pregnant and hadn't had a MRI for six months since my last quarterly MRI in September. If you're holding your breath you can let it out now ... my MRI showed that my tumor is still stable and hasn't been affected by the pregnancy. We aren't out of the woods yet though. The surge in progesterone and estrogen in your body when you're pregnant are what are thought to nudge the tumor out of hibernation, and those levels are highest in the third trimester. So seriously ... July can you please get here as fast as possible??
Booth Bump - Working a Tradeshow at 22 Weeks
Around week 22 I felt the baby kick for the first time, which made the pregnancy seem so much more real. I no longer felt fat for no reason, I really felt like there was a baby growing inside of me. Since then I've felt the baby move more and more each day, and it always makes me smile and feel like I have a little friend that I'm carrying around with me everywhere.
Couldn't Resist Buying This at the Kennedy Space Center
Preparing for Baby
We had decided that we would go public-public with the announcement of my pregnancy somewhere between the 22nd and 24th week when we knew that my health wasn't in jeopardy and that we would definitely be having a baby. For anyone who has seen me in person they could probably tell anyways ... either that or they thought I was really packing on the pounds.
Flashback to 8 Weeks - The Last Hint of Abs
I've gained 15 pounds so far which is right on track with where I should be, but for someone who has spent their whole adult life trying to maintain a certain weight, gaining this much weight has been a little traumatic. I know I'm pregnant and I know the weight ensures the health of the baby, but getting so much bigger in areas outside of my belly was surprising and hard for me.
12 Weeks - Bump is Growing
18 Weeks - Too Many Burritos?
24 Weeks - Really Looking Pregnant
Recently we've finally started moving forward with preparations for the baby. We've started a nursery and have chosen a daycare center for when I return to work. We decided early on not to find out the sex of the baby, and because of that my love for drab colors has made its way to the nursery. Grey and tan and white all over! I love it.
Fifty Shades of Gray
As for daycare, I had found out earlier in the pregnancy that daycares fill up long before you have even given birth, and that for many places you have to reserve a spot in your first or second trimester. Seriously? After visiting several daycares we ended up choosing one downtown about 1/2 mile from our apartment. It was the most expensive daycare we looked at but it was our first choice by far. The monthly cost gives me anxiety just thinking about, but I don't think I would have been happy with the other places, and if David has to only eat ramen for lunch for the next 18 years it will be worth it. Haha. Just kidding David. We'll both have to make changes in our lifestyle, but it will be worth it.
So now what? Well for now I pray and try to remain positive. I'm 25 weeks as of today and the next 15 weeks can't come fast enough. My next MRI will be right after I give birth, unless symptoms occur which indicate that my tumor is growing. I'd rather not think about that for now, and just try to enjoy being pregnant and revel in the fact that in 3 1/2 months David and I will be parents. We're not sure what to expect and know that it will be hard, but it will be worth it.
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