Disclaimer: In this post I describe my experience with miscarriage, surgery and events that led up to my cancer diagnosis.
Nine months ago, I took a pregnancy test. It was positive. At that moment, Adam and I hugged, cried and realized that we were going to be parents. Sure, we didn’t have a kid running around in our house yet, but in our minds – everything was changing. We started talking about this little person we were going to be bringing into the world. What would we name them? How was I going to feel? What room would they have? When would we tell our friends and family?
Nine months have flown by and instead of celebrating Mother’s Day today, I am continuing to fight a cancerous tumor that started as a result of that pregnancy.
Finding the words to talk about what we went though at the beginning of these last nine months hasn’t been easy. I don’t know how many times I have sat down at the computer to try to get it all out and just had to stop. So much happened – we went through so many emotions, it all just seems surreal to think back on. We went from thinking we were going to be parents, to losing what we thought was a baby, to months of not knowing what was actually going on… and finally finding out I had developed cancer.
Labor Day
Adam and I found out that we were expecting around Labor Day of last year. We thought, what a perfect day to tell our parents, crack a joke about how it’s Labor day and that I would be going into Labor in nine months. Not able to resist a good joke, that is exactly what we did. Of course, our parents were thrilled – it would be the first time that either of them would become grandparents. We knew that there were risks with telling people early. There is some “rule” that you shouldn’t tell people until the first trimester is over, but we couldn’t wait. I figured, either way, this was a big event that we were going through and we would want to share all of it with friends and family, even if the unthinkable happened. Also, as someone who enjoys a beer every now and again, it was pretty obvious to my friends that there was a reason I wasn’t drinking.
Over the next couple weeks, it really started to sink in that I was going to be a mom. My body wasn’t just mine anymore, I was growing something and had to start to take better care of myself for them. I started eating healthier and reading up on all the pregnancy apps I should start using. I loved watching Adam get excited about having a baby. This was something we always had talked about, but never really grasped onto until it was real. I pictured how amazing he was going to be as a dad, and that I was so lucky to be able to experience this with him. What was our little human going to look like? I loved walking around and feeling like I had this amazing little secret that no one knew about yet – even early on, I felt such a bond to this thing I was growing. I smiled, a lot.
A phone call I never wanted to get
I was seven weeks along when I started spotting. My friend, Megan, and I were in Chicago for a conference when it happened. I instantly was panicked. I immediately started blaming myself. I shouldn’t have flown. This trip has been too hard on my body. I had some drinks before I knew I was pregnant. I’ve done something that has caused this pregnancy to end. When I got home a couple days later and the spotting hadn’t stopped, I called my doctor. She measured my HCG levels and they were very high – which was a good sign. Since they were high, she then had me go in for a pelvic ultrasound. While I was there, I wasn’t able to see the screen as the ultrasound tech administered the test, and they didn’t really say anything about what they were seeing. I wondered, do they see a little heartbeat? What does it look like?
A day later, I got the call. I was going through a miscarriage. Instead of having our first prenatal appointment with our doctor in a week, we were going to be discussing next steps with our miscarriage. By the time I saw the doctor, the bleeding had picked up. She told me that the ultrasound had shown signs of a molar pregnancy, but stressed that it was rare and most likely just a miscarriage that occurred because of a non-viable pregnancy. She said she didn’t see an embryo, which puzzled me, and she explained that my body either absorbed it into other tissue, or it was too small to see.
The doctor recommended that I have a D&C procedure to remove the tissue, because it needed to be examined to be sure it wasn’t a molar pregnancy. If it was, I would have to be followed up with more closely, since there would be other risks involved. Two days later, I went into surgery. When I came to, Adam told me he had talked to the doctor, and from what she said “everything had gone fine and there were no signs of a molar pregnancy.” We were relieved and I felt like I would finally be able to process all that had happened – and begin to heal.
What you are going through is ‘normal’
I was told that I might bleed for about a week after surgery. Well, my bleeding really never stopped and I had now started to pass clots. I called the nurse about 2 weeks after my surgery to report my symptoms, and I was told that for some women, bleeding can last longer, and if I wasn’t changing my pad 2 times in an hour, I was fine; some clots are normal. I was relieved, but ready to get back to normal. At my follow up appointment about a month after surgery, I was still having the same symptoms. I was again told it was normal for some women to bleed longer after surgery.
When I think back to all of that, it’s really hard for me not to be upset. All it would have taken would have been a simple blood test to tell my provider that my HCG levels were not dropping as they should after surgery and I was not healing properly. If it would have been caught right away, there is a chance I would already be past this and would still have my hair. I learned throughout this that you have to fight for yourself when it comes to healthcare. We all know our bodies best, and when we think something isn’t right, we are probably correct.
Black Friday
On Thanksgiving day, Adam and I were all packed up and ready to spend the long weekend at a cabin in Minnesota. We had decided we had been through so much in the previous months and we should take a vacation to relax. But on that day, I still wasn’t feeling quite right – almost two months after my surgery. Adam convinced me I would feel better if we just went to the walk-in before we left, just to make sure everything was all right. I was so scared to go in, fearing that they would tell me I wasn’t ok.
What we found out that day was that my HCG levels were still sky high, and an ultrasound showed again that it looked as though I had a molar pregnancy. I would need another D&C – and soon, as this had now been festering inside me for two months.
I had never felt so numb and out of touch with my body as I did at that moment. I was upset that I had reported my symptoms a month prior, only to be told I was normal, and terrified that I had to have another surgery. The next day, I met my surgeon and new OBGYN, Dr. Dangerfield. We finally had someone who spent time with us and explained everything that had been going on. We knew that day, I was finally in good hands. He said there was most likely tissue that was left behind from the first surgery, and that it had continued to grow. He had a new plan; after my next D&C surgery, he would be following my HCG levels weekly until they got back to 0. He wasn’t going to leave me to wonder if I was ok anymore, and he would personally be watching over me. Oh, and if you were wondering if there are any black Friday deals at the hospital, there aren’t.
The second surgery went well, and again, there were no signs of a molar pregnancy – even the pathology came back normal. We monitored my HCG and after 2 weeks, I got a call from Dr. Dangerfield. He told me that he had sent my pathology to Mayo to get reexamined, and it had indeed been diagnosed as a molar pregnancy. This was a really hard thing for me to hear after everything I had been through. After hearing the term molar pregnancy for months, it was finally real – I had had it all along. How did my pathology get diagnosed as normal twice? I wondered if anyone talked to the pathologists who reviewed my case. Hey, might wanna study up on this a little more? Honestly, for my healing and sanity, I have really had to refrain from getting mad and upset at all of this, but it hasn’t been easy.
After my diagnosis, I was sent to my oncologist and started all my testing. My ultrasound showed that since this had been allowed to hang out in my uterus so long, I now had an invasive mole, otherwise known as Gestational Trophoblastic Disease. A tumor had worked its way into my uterine muscle, and there was a good chance I was going to need more treatment – possibly even chemotherapy.
If you would like to pick up where this story leaves off, check out my previous post.
1 in 4
One thing I’ve learned though all of this, is that many women and families have experienced miscarriage and infertility. Statistics show that 1 in 4 pregnancies end in a loss. That is not a small number, and something I didn’t know much about until I personally experienced it. Throughout this whole ordeal, almost everyone that we have spoke to about it has said they have experienced a miscarriage. It is such a hard thing to go through, both physically and emotionally. Families and women shouldn’t have to suffer in silence through it, and I really wish it was more openly talked about.
For anyone reading this that has gone through a loss or has struggled with infertility – know that I feel your pain and heartache, and I’m sorry. Something I have found through this is that many don’t know the right things to say to someone who is experiencing a loss, or struggling with infertility. I’ll have to admit, this is something I have learned through this process as well; how do we be there for the people in our lives going through something so hard? I’ve gathered a few articles below that I think do a good job of informing us how to be there for those in our lives going through this.
- What to say (and not to say) to someone living with infertility
- If You Want To Support Someone After A Miscarriage, Don’t Do This
I’ll close by saying Happy Mother’s Day to all of the amazing moms out there (human and pet 🐾). And to all of the women who are going through, have gone through infertility or miscarriages, know that I am thinking of you today and my heart is with you.
Thanks for following along – this was a tough one,
Shannon
