Life One Step At A Time

6. The Pregnancy Test

I had 7 negative pregnancy tests in a row during my time on Accutane (February-August). I took my birth control religiously and we were extremely careful. I was so sure there was nothing to worry about when I missed my period in July that I didn’t even mention it to Mason until a week later. I was stressed at work, I had gotten my last period on time (though, it was in April since I was on the pill where you only get 4 periods a year), and my periods have always been irregular (which is why it took me until I was 6 weeks pregnant with Charlotte to even consider taking a pregnancy test!) But I did mention it to the dermatologist at my appointment in mid-August. I double-checked that the test I took in the office that day was negative and she advised me that it was probably nothing and I should take a home pregnancy test in about 2 weeks just to make sure. I went on with my life and didn’t think anything of it until the end of the month.

We took Charlotte to the zoo in D.C. and to visit my grandmother in Northern Virginia the last weekend of August and that was the last day I spent blissfully unaware of anything wrong with my body. I look back at pictures from that day now and I’m envious of the person in them. She was happily enjoying time with her family, casually planning for a busy Fall, thinking maybe it would be nice to have another baby once Charlotte was a little older. It’s hard to look at these photos now and not feel a little bit angry.

Charlotte and I at the zoo in late August, 2019.

This zoo meltdown picture always cracks me up 🙂

On the way home, I started cramping. It wasn’t unusually painful (it felt like heavy period cramps), just unusual timing. And it triggered me to remember the advice of the dermatologist about a home pregnancy test. I waited until the next morning and took one in my bathroom. I set it on the counter and the whole thing felt eerily familiar as when I took the test that told me I was pregnant with Charlotte. I went on with my morning routine and when I remembered to look, I saw the positive symbol. I looked again, compared it to the instructions on the box, and couldn’t wrap my mind around it, much like when my test was positive with Charlotte. Only this time, instead of terrified excitement and wonder, I just felt terrified. All I could think about was the possibility of being pregnant while on this horrible medication and feeling so guilty we had somehow let this happen. When I could move again, I woke Mason up and made him double-check I was reading the test right. Between sobs and shaking, I managed to say something about calling the OB-GYN on my way to work. I spent the rest of the morning on the phone, trying to make someone at my OB’s office understand why I was sobbing as I requested the first appointment available.

Maybe I was naive when I got pregnant with Charlotte, but I quickly learned that no one thinks it’s as big a deal as you do. When you call the OB’s office and say you had a positive pregnancy test, they say “when was your last period?” and “you can meet with the nurse for your pregnancy consultation on this date”. With Charlotte, I didn’t completely believe I was pregnant until they did an ultrasound (which they had to do early because I couldn’t remember my last period and they had no idea how far along I was). The day I found out, I asked the nurse on the phone how they confirm if someone is pregnant before an ultrasound and this is how the conversation went:

Me: “Don’t you do a blood test or anything to confirm this?”

Nurse: “Did you take a home pregnancy test?”

Me: “Yes, I took three.”

Nurse: “Were they positive?”

Me: “Yes, all three of them.”

Nurse: “Congratulations, you’re pregnant!”

Me: “What?! What if I did it wrong? Aren’t there false positives?”

Nurse: “Did you pee on the stick?”

Me: “Yes.”

Nurse: “Congratulations, you’re pregnant! We’ll see you for your initial consultation in a few weeks.”

So I had this conversation playing in my head on August 26^th when I was desperately trying to explain that I was very doubtful that I was pregnant and it was imperative I see a doctor and have an ultrasound as quickly as possible because I was on Accutane and I just needed to know what was going on. I went back and forth and talked with so many different people, and they were finally able to schedule an ultrasound for 10 days later. In the meantime, I begged them to let me get my blood work done so we could see about my HCG levels (and this is where the continuous obsession with my levels began).

This was the first time in my life that I found myself not giving a shit what a doctor or nurse thought of me and doing what felt right for me in that situation. I don’t know if it was the panic attacks, the shaking, or the constant nausea, but I just kept pushing that day, even calling another OB-GYN office to ask them to submit blood work (which they did, but in the meantime, my regular office sent in my orders and I wanted to keep all my records together). I rushed to the lab to do my blood work and got back to work a quickly as I could, hoping no one had noticed me sobbing on my phone all morning. I couldn’t eat anything or think about anything else all day, but somehow managed to make it through an office-wide lunch and a staff meeting in the afternoon before I heard back from the OB-GYN’s office.

The nurse told me my HCG levels were 134.9, or in her words “very low, but not negative”. You’re looking for levels between 0 and 5 in order to consider yourself “not pregnant”. However, 134.9 is extremely low and usually seen either in very early pregnancy or a miscarriage. We ended the conversation with the nurse explaining that there was indication of a pregnancy, but likely not a viable one given the timing of my missed period, and I should have repeat blood work done in 2 days. In a viable pregnancy, the levels should double or even triple by that time, and that would give us more information. I got off the phone and broke down in tears. I was relieved yet unconvinced, still terrified about what was happening.

One of the worst days of my life (until that point) ended with me throwing away all the rest of my Accutane and birth control and sobbing in Mason’s arms. I couldn’t even bring myself to tell my parents what was going on because I had no idea how to explain it and I felt so guilty. I was so tired from crying and not eating, I just put Charlotte to bed and fell asleep, hoping the next few days would bring some clarity.

5. Accutane

This past February, I went to the dermatologist to talk about acne. My acne didn’t really develop until my 20s and got MUCH worse during the beginning of my pregnancy. I also can’t leave my face alone – if there’s something there, I’m going to mess with it and make it 10 times worse. So, I was over it and the dermatologist said I would be a good candidate for Accutane. Anyone who has ever been on the medication knows it can work really well, but it can have a lot of nasty side effects like extremely dry skin, stomach issues, and severe birth defects if you pregnant while you are taking it (or even for a little while after you stop taking it). You also can’t give blood while you are taking it because if a pregnant woman received your blood, her baby could be affected by the medication as well. It’s serious.

I discussed it with Mason and we felt like this was a good time to begin the medication since we weren’t planning on having another child for a little while (and I was hoping if we got the acne under control, it wouldn’t be an issue with the next pregnancy). So we started all the necessary blood work and pregnancy tests and I began the medication in March. My acne got much worse for a while and my lips were so dry and cracked that I had to have Vaseline within reach at all times throughout the day or I literally couldn’t open my mouth to talk – my lips would just split open. Women have to have monthly visits to the dermatologist, be on two forms of birth control, take a pregnancy test, and then log on to an account where you answer questions about birth control and birth defects before the dermatologist is allowed to call in your refill. And typically there is 6-8 months of this. It’s a hassle, the side effects suck, and I wasn’t seeing that many results, so I would be resentful of this medication if I didn’t believe it might have helped me realize something was wrong, and potentially had a hand in saving my life.

4. Pregnancy and childbirth

I have an amazing 2 year old daughter named Charlotte. She’s beautiful, articulate, curious, loving, opinionated, and so funny. She makes us laugh every single day. I learned I was pregnant with Charlotte on April 11, 2017 when I was about 6 weeks along. I started to journal that week and kept track of most of the important things thorough out pregnancy. I wanted to remember everything and thought it might be helpful in a subsequent pregnancy to compare. Ironically, I used this same journal to record everything about my diagnosis just two years later.

Maternity photos, November 2017
Photo Cred: @omar_tyndale

My pregnancy was relatively normal. No strange test results, no crazy side effects or symptoms – some nausea, lots of hormones and acne, and the rib and back pain was really the worst of it. She was due in December but surprised us all (much to our delight as we already have several December birthdays in the family!) and came 10 days early in November instead.

The night before Charlotte was born! My family calls this my “labor glamour shot”, but I actually think it’s a good advertisement for my curling wand and thick pregnancy hair! I had done my hair that morning for work and the curls lasted all the way through labor 🙂

My labor was a little strange, I guess, in that my water broke around 11pm on a Monday and then nothing happened. We went to the hospital because they were concerned that I wasn’t having contractions and the baby was no longer protected with amniotic fluid. I would have a contraction here and there every 20 minutes or so, and that continued into the morning when the decided they needed to induce me (ugh – not my plan, but who’s birth actually goes according to plan, right?) I made it 4 or 5 hours after being induced before I asked for some relief. I couldn’t get in the tub because I had to be hooked up to the monitors after induction and they were a little leery since my water had already broken (because, infection). I couldn’t easily walk around. So I was left without a ton of pain management options. I ended up with an epidural, and for a while it only worked on one side of my body (one of the strangest feelings I have ever had!) Finally, after what seemed like an eternity, they turned me on my side, and I started to feel relief. I started pushing just after 5:00pm and Charlotte was born at 5:30 (so about 18 hours from the time my water broke to birth). The doctor told me to reach down and pull her out and I thought that was a confusing direction in the midst of labor, but I did it and it was amazing! She looked right at me as I pulled her out! Mason cut the cord and announced she was a girl (we didn’t find out in advance, and it was amazing – I would recommend it to anyone who is expecting!!), double-checked with the doctor to make sure he saw things correctly, and right on my chest she went. She was such a pretty baby – I know I’m biased, but I was fully expecting an alien-looking thing, and she was just so pretty. I couldn’t stop looking at her.

After labor, I remember the doctor and nurses saying they had delivered the placenta, but I really wasn’t paying attention at that point. They pushed on my stomach A LOT and for a long time afterwards, and they did tell me they were having some trouble getting my bleeding under control. But eventually things settled down, a nurse helped me to the bathroom where I think I peed for 5 minutes straight (apparently IV fluids will do that to you) and we went to the recovery room to introduce Charlotte to her whole family. It was amazing, painful, wonderful, terrifying, and beautiful all wrapped up into one.

My postpartum recovery seemed average (as average as you can feel after pushing a human being out of your body, I guess). We were discharged from the hospital in the normal 2 days, though we were back a few days later because Charlotte had jaundice. After a night under the blue lights, she was just fine! I swear I broke or badly bruised my tailbone during labor, because I felt it hurting just after the epidural wore off and it hurt for about 6 months afterwards. A few days after Charlotte was born, I had body aches and chills and felt like I had the flu. But I never tested positive for it and attributed it to the extreme drop in hormones women experience just after birth. Breastfeeding was hard for exactly 8 weeks, and all the sudden, we both got it and it got easier. I had postpartum bleeding for about 2 weeks, it stopped for about a week, and then started again for another 3 or 4 weeks. And that is the only thing, looking back now, that I wish I had pushed with my OB. Chances are it was totally normal, but that and the postpartum hemorrhaging just after birth are the only two odd things I can point to about my birth experience that could have anything to do with my diagnosis almost two years later. And that is probably me grasping at straws and trying to make a shitty situation make any kind of sense, but I think it does serve as an opportunity to remind women that they know their bodies best, and if something seems strange to you, just talk about it with your doctor. And if it still feels strange to you, talk about it with another doctor. Maybe it’s nothing, but if I have learned anything through this process, it’s that you will never regret advocating for yourself. Sometimes I focus too much on medical bills and feeling like I don’t want to pester my doctors, but it’s just not worth questioning something later. Be vigilant with your body, make notes for your doctors, and ask questions until you are satisfied.

3. How did we get here?

A question I ask myself every single day. I began to journal when all of this got complicated as a way of recording and remembering important medical information, symptoms, blood levels, etc. But looking back now, it’s a fascinating and heartbreaking road map to where we are today. And yet, there are so many questions to which we will likely never have answers, that my map is only partially complete and I’m working on being ok with that.

I will tell you, I wouldn’t have gotten through this without my husband, Mason. This diagnosis has added a lot of stress in our lives, and I know there were times we let that stress get to us, but he wiped my tears every day and night and told me we were going to be OK, and he truly believed that even when I wasn’t sure. Find yourself a partner who doesn’t care when you get mascara on their best shirts and you’ll be all right in life 🙂

2. My Cancer Diagnosis

So let me tell you what I know about my cancer. I’ve researched this diagnosis for months, spoken with two teams of oncologists from two universities, received reports from 4 different pathologists, and I still have many questions. Most of the statistics I will mention have come from the American Cancer Society, or other scholarly journals on the subject, as well as my doctors.

I had a Placental Site Trophoblastic Tumor which is a type of Gestational Trophoblastic Disease. GTD encompasses many kinds of tumors and cancers that all, in some way, involve abnormal cells in the uterus. Though this is a gynecologic cancer, it only develops from cells that are involved in pregnancy (not just uterine cells themselves). Placental Site Trophoblastic Tumors are extremely rare and they develop in the space where the placenta attached to the uterus. When they form, it’s usually after a normal, full-term pregnancy or an abortion, but can result from a molar pregnancy as well. Sometimes, it takes years after a pregnancy for these tumors to grow or become detectable. Not all forms of Gestational Trophoblastic Disease are cancerous, but according to my oncologist, PSTTs always are. Generally, and especially if found early, GTD is very treatable, but the treatments vary based on the diagnosis and stage.

From my research, I’ve learned that Gestational Trophoblastic Disease accounts for less than 1% of all gynecologic cancers (think ovarian, cervical, uterine, etc). GTD occurs in approximately 1 in 1000 pregnancies, and most of those are molar pregnancies (but remember, not all of these are cancerous). Placental Site Trophoblastic Tumors account for less than 1% of all Gestational Trophoblastic Diseases. Hence the 150-200 cases recorded worldwide. So I’m sure someone can do the exact math on that, but all I really cared about when I read those statistics was “that’s an extremely small number – why me?”

Generally, the symptoms of this tumor can include missed periods, abnormal bleeding, and low beta-HCG levels (the hormone produced by the placenta during pregnancy and what pregnancy tests detect). My symptoms didn’t exactly follow the norm, which makes this whole thing even scarier, but more on that later.

Many GTDs can be treated with chemotherapy, some require surgery, and still others require both. Mine required surgery and hopefully I won’t need other treatment, for which we are very thankful. It’s strange to be thankful that all you needed was major surgery to treat cancer. It still feels completely surreal. If you want to learn more about Gestational Trophoblastic Disease and/or Placental Site Trophoblastic Tumors (because I obviously haven’t scared you enough), I would suggest visiting The American Cancer Society’s website on the subject – it was a very helpful resource for me.

Very bluntly, I hate this diagnosis. I hate that I grew this amazing organ during pregnancy that kept my baby alive and thriving, and then it betrayed me afterwards. I hate that I have spent the past four months of my life thinking about some piece of this every single day, instead of doing all the other things my family and I thought we would be doing. But I’m also proud of how we have handled it. I’ll go into more detail on how we got here, but I’m proud of the way I advocated for myself and for my family, I’m proud of the decisions we have made, and I am proud to be part of a family that came running when I needed them most. This entire process feels like it has been one piece of bad news after another, but looking back now, I realize that wasn’t exactly true – we got a lot of encouraging news along the way and we just had to slow down and take it one step at a time to truly realize it.

1. Possibly the strangest few months of my life so far…

Hmm – how shall I begin this story? I’ve had so many thoughts and emotions about everything that has happened over the past few months that now it is difficult to put things in a clear and concise order. So I guess I will have to follow the advice my mother always gave me when I was stressed out about one stupid thing or another as a teenager. Advice a therapist professionally echoed many years ago, which was also the inspiration behind this blog’s title: One Step At A Time. It’s a difficult piece of advice for me to follow – I like to see the end before I begin. I want to know how things are going to look, I want to know how a project will conclude, I want to know what the finished product will be before I begin. Then I can visualize how to get there, I can work toward a goal, I can put the pieces together for a quality result. And sometimes in my life, if I can’t visualize the end and figure out a way to get there perfectly, I freeze. But that’s not usually how life works – we don’t always know what the end looks like before we begin, and sometimes we just have to take things one step at a time to see what comes next. Sometimes freezing is not an option. And believe me, nothing has ever hammered that home for me more than cancer.

It’s difficult to start this story for many reasons, but mainly because I don’t really know where it starts. My cancer is rare. And when I say rare, I mean like 200 documented cases worldwide. 200. There have been a lot of “What the actual fuck” moments through this process, but that was one of the most profound. My oncologist has been practicing her specialty for over 20 years and she’s seen 3 of these tumors, including mine. One person lived, one person died, and I guess I’ll be the tie breaker. That’s probably more morbid than my family cares to read, but it’s how I felt when she told me that statistic. And it’s where more of the “one step at a time” mantra comes in. I will write specifically about the cancer in later posts, but to finish this one, I’ll just say that even though we are still in the midst of this major life-altering situation, I’m ok. I attribute that to a few things:

1. My husband, Mason, and our families: Plain and simple, I could not do this without them. They are my rocks in this very stormy, cancer-y sea. They cook, clean, take care of the rowdy toddler (who is recently two but has exhibited “terrible two-ness” for some time now), walk the crazy dog, write notes at doctor’s appointments, listen, love, and when none of that is what I need, they sit and cry with me.

2. My doctors. It took awhile to get to this diagnosis, and I had to advocate for myself a lot (more on that later too). But they advocated just as hard, even when I didn’t want to hear it. Things might look a lot different if they weren’t willing to fight just as much as I was.

3. My childhood panic attacks. Yeah – I don’t often feel thankful for those, but when you start having anxiety and panic attacks at age 11, you learn some good coping mechanisms along the way and they can serve you well in these situations.

4. Friends and colleagues. They call, text, check in, make meals, visit, take projects off my plate, buy books for my kid, and sometimes they cry with me too.

5. My mantra. “One step at a time”. It’s weird to call it a mantra – I’m not really a mantra-kind of person. But through some of the most difficult times in my life, I have found myself repeating the phrase over and over to curb anxiety and figure out what to do next. Maybe I’ll finally get my tattoo – “one step at a time” on the inside of my foot (as my husband rolls his eyes 😊) Maybe it’s more of a directive or an affirmation. Whatever we call it, it’s where we are right now – relishing the normal days without talk of cancer, celebrating victories, large and small, and taking life one step at a time.