Charlotte celebrating her 2nd birthday! Photo Credit: @wmw.photo
“Waffle Lot of Fun” Waffle Bar š
Charlotteās birthday fell on Thanksgiving this year and we had the sweetest breakfast birthday party for her. We had a āwaffle lot of funā celebrating with a special fun-fetti waffle just for Char (this child asks for waffles at least 3 times a day). It was cozy and warm, we watched the parade and opened presents, and it was just exactly what I wanted for her.
But I couldnāt help feeling sad afterwards. I think every milestone for a child makes a parent simultaneously happy and sad because it marks the passing of time. This milestone was especially emotional, though, because Mason and I had very loosely talked about trying to have another baby once Charlotte turned two. It wasnāt a hard and fast deadline, but it was something we discussed, and just one more reminder that it wonāt be easy for us to have another child. IVF is expensive and it doesnāt always work. Gestational carriers are hard to find and extremely expensive. Adoption is costly and sometimes doesnāt work out. We have no idea if weāll be able to have another child and even though I am so grateful for my daughter and was so thrilled to celebrate her birthday with her and our family, it was hard. Would we ever celebrate another 2nd birthday in our house?
Thanksgiving was lovely as well, but I probably overdid it getting ready for Charlotteās party and didnāt feel well. In addition to the physical pain, I just felt down. I have so much to be thankful for and I was trying so hard to put that all front and center, but I just felt the anger creeping in. I so admire people who are able to take a diagnosis like this and turn it into something good and useful. But I just donāt feel like Iām there yet. Cancer has not made me thankful. I donāt consider myself a better person for having gotten cancer. Iām so angry. I am grateful Iām not dying of cancer (at least, I donāt think I am). Iām grateful for good doctors and invaluable friends and family who have carried me through this, but I am not thankful for cancer.
Generally, the recovery has not been too bad. The first week, my major complaint was the abdominal swelling and the air bubble pain, but once that subsided, I stopped taking the pain killers and was able to move around a bit more. My mom stayed with us the first week and was so helpful with Charlotte and doing things around the house. There were a lot of random outbursts of tears and anger that first week, and she and Mason dealt with it like pros. They also filled in a lot of the gaps that I didnāt remember from the hospital.
By Friday, November 8th, we hadnāt heard anything about my results and I was feeling a little anxious. My mom left to have dinner with some friends and Mason, Charlotte and I decided to watch a movie together (Charlotteās choice, of course, was Frozen ā she says āI watch Olaf!ā). My phone rang in the middle of the movie and it was my oncologist. She asked how I was doing and then said āI have good news ā your lymph nodes are clear!ā She then went on to say that when they examined my uterus, they found a bit of a mess. There was absolutely no question this was a Placental Site Trophoblastic Tumor and the cells of the tumor had invaded 10 mm into the lining and muscle of my uterus, so there was no way another D&C or even a resection could have gotten it all. She said she was feeling really good about the decision we had made and because my lymph nodes were clear, I was in a āwatch-and-seeā period now. I would have to have repeat HCG levels drawn on the 18th and depending on the results, probably not again until my 6-week appointment. I hung up the phone and filled Mason in, and he immediately burst into tears, telling me he had been so worried. It was the first time I had seen him visibly upset throughout this whole process, and it really cemented for me how hard this has been on him and our families. It had been so hard to focus on anything but my diagnosis and impending surgery before this (read: myself) that I really needed that reminder that everyone around me was affected by this too. We spent the rest of the evening optimistically updating family and friends and watching Frozen š
Strangely, that phone call was the first time in this process that I admitted to myself that I had cancer. I didnāt doubt the doctors and pathologists before, but there was always this shred of doubt before surgery that maybe they had it wrong, maybe the tissue they tested was tainted. The results completely validated my decision to have the surgery and left me without any questions or regrets. It was also the first time I felt scared about my health (which is odd, since the doctor had just given me very optimistic health news). But the results seemed to indicate this cancer had been growing in my body for some time without symptoms, and that is terrifying. So not only did I definitely have cancer, Iāve probably had it for some time and it could have spread at any point. How do people live their lives after finding out something like that? Iāve been sitting with it for over a month now, but itās still shocking. My counselor mentioned this was likely a protective coping mechanism on my end ā not allowing myself to feel scared about cancer before surgery. Itās an interesting way to think about it and constantly fascinates me how the human brain deals with trauma.
After my mom left, my in-laws were so helpful at helping me get Charlotte ready in the morning and taking and picking up from school. Masonās work schedule makes it difficult for him to do pick up or drop off and since I really couldnāt pick Charlotte up, it was nice to have the help! Charlotte got really good at using step stools and climbing into her car seat by herself, and her new favorite activity during my recovery was sitting in her booster on the floor next to the Christmas tree to eat her meals so I didn’t have to lift her into her high chair! But itās was really difficult ā we didn’t have that much time alone together and though I broke the rules on occasion when necessary, I really didn’t fully picked her up or carry her around for 6 weeks after my surgery.
I had my blood drawn on November 15th (I seriously have track marks in my arms now from all the blood draws ā that will make for some interesting conversations in the future). My doctor emailed with results around 5:00 on the 18th and as soon as I saw the email, my heart started pounding. I was so scared to know whether or not my HCG levels were still elevated, and the implications if they were. The message said something like āyour levels are basically normal ā letās repeat at 6 weeks.ā I was relieved, but the way she phrased it made me wonder what the actual number was. Mason was really excited and started congratulating me, but all I could focus on was finding out the specific number. The official results came in later that evening, and the levels were down to 1.3 (anything between 0 and 5 is normal)! This was the first time I had felt hopeful since the beginning of this saga and I really felt like I could take a deep breath.
We arrived at the hospital at 5:15am on November 4th, apprehensive and ready to get it over with. I reminded every doctor, nurse, anesthesiologist, lab technician, and anyone who walked into my pre-op room that they were, under no circumstances, to remove my ovaries (ok, fine, if you see they are riddled with cancer, please remove them, but just know Iām going to be pissed when I wake up). They all assured me the ovaries would stay put as long as they looked healthy. I got some wonderful drugs, told Mason and my mom that my face felt weird, and they wheeled me off. I remember climbing on to the operating table and starting to cry, the nurse held my hand until I donāt remember, and then everything is dark until recovery.
Just know that all my recollections from the next two days are under the influence of a lot of drugs and a generally poor emotional state, so take from them what you will. I remember I could hear things before I could see anything, and I was in a lot of pain and discomfort from the air bubbles in my abdomen (they pump you full of gas during surgery so they have room to work, and they try to get it all out before they wake you up, but some usually sticks around and patients usually experience some discomfort until the bubbles subside ā thank you to my nurse anesthetist sister-in-law for warning me about this before surgery or I would have been much more upset!) I heard the nurse on the phone asking for Mason, and telling him I was a little upset and he could come back to comfort me. I vaguely recall him standing over me and trying to calm me down, but I just kept asking over and over if I still had my ovaries (when I get focused on something I want, itās difficult to break my concentration, apparently even with heavy drugs). For some reason, I was really bothered by the fact that they had switched my hospital bracelet to the other wrist during surgery ā not sure why this mattered, but it really freaked me out. And this is the part I really hope I didnāt imagine because itās one of the most amazing experiences Iāve ever had with a nurse ā my recovery nurse took my hand, looked at me and said āYes, you have your ovaries, and yes, this really fucking sucks and if thereās ever a time to say that, itās right now!ā And I remember feeling surprised and a bit worried about how long I might have been dropping F-bombs without realizing it, but being so grateful to my nurse for understanding and commiserating with me! Nurses are the best and they have to deal with so much shit in their jobs (literally and figuratively), so please be nice to them the next time you interact with one š
I was wheeled to my room and slept on and off the rest of the afternoon. My mom went home to take care of Charlotte and Mason stayed with me overnight. That evening, the nurses had me get out of bed and walk around, and Iāll just say that this was excruciating and I felt like I was going to throw up the whole time. In case you didnāt already realize, you use your core muscles for just about every motion your body makes, and they had just cut through mine in 4 places (not to mention a very uncomfortable internal incision they had to make through a very sensitive area :/) The air bubble pain never let up and I couldnāt wait to get back to bed.
Not my best angle, but leave it to Mason to preserve a memory in the hospital š I’m actually proud of this photo now – I had just battled cancer! Also, look how seriously they take hydration post-surgery. That’s a lot of beverages.
The next morning I felt much stronger and walking around was a bit easier. The nurse gave me a shot in my stomach that left me seriously questioning if I actually could handle the needles involved in IVF, and when I asked why should couldnāt give it to me in my arm, she said āOh, itās for blood clotsā. Mmmk then. They said I could be discharged that morning, but I had to pee a certain amount first. Proud to say I exceeded their expectations (seriously, it rivaled the pee I had right after my epidural wore off when I had Charlotte). My doctor checked on me one more time before we left and said she would call me later that week with the results of the lymph node biopsy and pathology, but that everything had gone smoothly. And off we went ā my mom to our house to get things ready, and Mason and I to the pharmacy to get my prescriptions. I remember briefly becoming aware that I was in a pharmacy, but unsure how I got there. And then, probably to the detriment of the democratic process, we stopped at our voting precinct to vote (it was Election Day). Yaāll ā I located my ID, verified my address with the election official, filled in a scantron effectively (I think) and got my āI votedā sticker and I have no memory of who was even running for election that day. I did look at the ballot prior to my surgery to make sure I had a good idea of the way I wanted to vote, but I honestly have no idea if thatās what I ended up doing. So, next time I have surgery near election day, Iāll try and fill out an absentee ballot in advance!
I rested for most of the day and then Charlotte came home ā I was so happy to see her! We knew she wouldnāt really understand what was going on but we had to tell her something about why I couldnāt pick her up, so we opted for the basic truth ā āMama has boo boos on her tummy and she canāt pick you upā. We debated whether or not to show her the incisions (they were pretty gross-looking at that point) but she insisted. So I showed her and she gave me a big kiss and gentle hug on the shoulder ā cue the waterworks. Even now, many weeks out from surgery, we have to look at mommyās boo boos every morning and every night. During my recovery, we talked about how much better mommyās boo boos are and how, even though mommy still couldn’t pick her up, she could give hugs and snuggles, and everything would be back to normal soon. Sheās been pretty amazing throughout the process (despite her terrible two-ness rearing itās head a few times!)
Just after my diagnosis, I called our local fertility center to try and get an appointment before my surgery. I was so nervous we would need to do something prior to surgery in order to have any biological fertility options afterwards, and we were quickly running out of time. They were so fantastic and were able to get me an appointment that week. The doctor I spoke with was easy to talk to and answered all my questions. He assured me that as long as the doctors were confident that I could keep my ovaries, there was nothing we needed to rush to do prior to surgery. He mentioned if, down the line, they determine chemotherapy was needed, we may need to discuss doing IVF sooner rather than later, but we werenāt there yet. We did an ultrasound and blood test to see whether I would be a good candidate for IVF, and he said everything pointed to yes. Unfortunately, the cost of IVF is not covered by my insurance (itās not a commonly-covered procedure) and it would be a hefty out of pocket cost. So that was disappointing, but I was reassured by the fact that it would be possible if we wanted to try down the road.
After a fast and furious Halloween with Charlotte and her cousins (she was a bumblebee, fully equipped with a stinger and antennae), Mason and I drove to UNC the next day to meet with their oncology team for a second opinion. I knew that their treatment plan was likely to be the same as my doctorās, but I also knew if I didnāt do my due diligence before surgery and there was any chance the answer could be different, I would regret it. The doctor was great about explaining other treatment options, but his recommended treatment was the same: hysterectomy with pelvic lymph node removal. He said some of these tumors had been treated with a uterine resection, but itās impossible to know how far into the uterine lining and muscle the tumor has invaded until you get inside, and depending on how much they have to resect, a subsequent pregnancy is unlikely. Additionally, there is a very good chance of spreading if the resection isnāt successful. He reiterated how difficult this cancer is to treat if it spreads outside the uterus. We left the office feeling both disappointed and validated that we had received the same answer. I really trusted my doctor at UVA and it would have been very confusing to get a different treatment option 72 hours before my surgery. It did feel very final, though. It was my last hope for preserving fertility, and it felt a bit like that had been ripped away. But after that appointment, I really felt like I could focus on surgery and recovery without questioning if it was the right decision. I wonāt say I have fully accepted what happened to me, but that was the closest Iāve gotten to acceptance during this whole process. I spent the rest of the weekend enjoying as much time as I could with Charlotte and Mason. My mom arrived Sunday afternoon so she could come to the hospital with us and help me in my recovery. My last HCG results came through at 77 and my uterus decided to go out with a bang ā my very last period started that weekend. Thanks for the memories, uterus š
A few days before my surgery – just enjoying time with my girl and, of course, Mason captured the perfect photo. Photo Credit: @wmw.photo
A few days after my diagnosis. We took Charlotte to Chick-Fil-A for lunch – this is me trying not to let anyone see the tears streaming down my face because we were surrounded by families, new babies, and pregnant women.
The day after my official diagnosis, I took Charlotte to school and Penny to the vet (see, life just keeps going even the morning after a cancer diagnosis). I got a call from my oncologistās office saying they needed to get me in for a CT scan to check for any evidence of the disease spreading, which they could schedule that day as long as I was comfortable signing a waiver for my insurance. It required pre-authorization and that could take up to 10 days ā yeah, 10 days before you could, with complete reassurance of insurance coverage, check to see if cancer had spread throughout your body. I told the very kind and helpful nurse on the phone āscrew that, letās schedule it for today. Iāll sign whatever documents you needā. And once again, in the midst of a medical crisis, I felt privileged. My insurance ended up covering the procedure, no questions asked, but when I got the explanation of benefits, the test was over $2500. What if they didnāt cover it and I had to pay that out of pocket? I would have been pissed, but it wouldnāt have changed my decision to have the test done without pre-authorization because I have money in my savings account. I have an employer that generously gives me money for my HSA account. And I have family that would have stepped in to cover any bills that we asked them to. What would happen to someone in my situation who didnāt have all those things, or didnāt have insurance? I am so thankful for the healthcare I received and every treatment that was available to me, but I canāt begin to comprehend our healthcare system and how this diagnosis could have completely wrecked us financially if we didnāt have everything in place like we do.
The same day, I filled my parents in on the official diagnosis and they were upset and obviously scared, but did what parents do best and told me everything would be ok and they would be there soon. They were headed to Charlottesville the next day to watch Charlotte and Penny while Mason and I went out of town for our anniversary. I got my CT scan (that contrast dye is so weird and burned intensely in my IV, but other than that, it was relatively routine). Then I picked Charlotte up early and took her to a local park to play on the playground. It was such a beautiful day and we had a really great time, but emotionally was probably not the best situation to put myself in, surrounded by pregnant moms and families with multiple children. I just found myself with a lot of resentment, something I imagine I will have to work through for a long time.
I also reached out to a friend from high school who I probably havenāt seen since then. And I felt a little intrusive, but I knew from social media that his wife was diagnosed with Gestational Trophoblastic Neoplasia earlier this year (though a different subset than mine) and underwent multiple rounds of chemotherapy this summer. I thought maybe she would have some insight into the process and could give me some context for the diagnosis. Itās such a hard thing to talk about, so I wasnāt sure she would want to discuss with a complete stranger, but she couldnāt have been more lovely and we set a time to chat on the phone that evening. We had very different treatment plans, but she made me feel so much calmer about everything and really validated how angry I was feeling about everything. Plus, she has baby a little younger than Charlotte, so she really understood the whole thing from a parent perspective. I feel very grateful to have heard her story and to have someone who is going through something similar so willing to share experiences and send thoughts and prayers my way. I sincerely hope we get to meet in person some day š
I went to work the next day and got a call from my doctor. She filled me in on a few things: The CT results were negative – there was no visible sign of disease anywhere else in my body, which was a huge relief. She said they would still want to check my lymph nodes during surgery to make sure there was no sign of spreading there, but with my normal blood work and negative CT scans, she was pretty confident this was Stage 1 cancer. We discussed again her concerns about another D&C (the last one didnāt work and you really increase the risk of disease spread every time you do it) and chemo (itās not likely to work, youāre going to feel like shit, and in the meantime, it might spread). We scheduled the surgery for November 4th with the understanding that this could change if I made a different decision, or the oncology team at UNC had a different treatment plan. She mentioned her gut feeling was that surgery would be all I need to treat the disease, which was oddly comforting.
We talked a little more about the procedure itself: robotic assisted laparoscopic hysterectomy. It would put me out of work for about 6 weeks and the recovery would take some time, but laparoscopic was the way to go with 4 or 5 small incisions in the abdomen and a much faster recovery than other methods. When we ended the conversation, I actually felt like a weight had been lifted a bit and I was more in control than I had been for a while. Remember that bit about me being uncomfortable with uncertainty and wanting to know how things are going to play out? This was a plan, a potential solution to a problem, a strategy for getting where I needed to be, as horrible as it was and as much as I didnāt want to do it.
“Summer of Love” on our visit to Cape Charles Photo Credit: @wmw.photo
Me filling in family and friends during the quiet time of our anniversary trip. Mason snapped this photo without me realizing. Photo Credit: @wmw.photo
I filled the family in on the test results and the plan for surgery and Mason and I left for Cape Charles for the weekend to celebrate our 5th anniversary. Itās such a sweet little town on the Eastern Shore and was such a welcome respite after during such a terrible time. But it was so hard to snap out of my mood ā all I could think about was cancer and surgery, and everything that went along with that. The weekend was lovely but filled with tears. I took advantage of the quiet time and filled a few friends and family members in on what was going on and tried to keep it together on the phone. Itās so hard to share this news in a matter-of-fact way. No matter how you say it, it sounds dramatic. I guess it is dramatic, but I just hate sounding that way. I hate attention on me ā itās never been appealing to me and it really stresses me out (weird that Iām now writing a blog to share about this crazy experience, but Iām thinking of that as therapeutic more than anything else).
I knew there was really no option other than surgery if I wanted the best chance possible of containing this disease, but I just kept forcing myself to think of all the things I was losing. Maybe irrationally, I felt like I needed to think of everything before my surgery just in case one of those things made the difference and changed my mind about the treatment. The most obvious was not being able to carry another child, which in and of itself is utterly devastating. But that encompasses so much that I had been looking forward to about having another child. Iāll never take another pregnancy test, never feel the flutters of little baby kicks inside, never wear my cute maternity clothes again, Charlotte wonāt get to experience the joy of putting a hand on my stomach and feeling her sibling move around, Iāll never get to attend the sweet prenatal yoga classes that got me through my pregnancy. As difficult as labor and delivery were, Iāll never get to go through it again. Iāll never labor for hours and lock eyes with my baby as soon as itās born, have it laid on my chest, claim that warrior feeling that comes with the hormone rush of delivering a baby. Maternity sections of stores are excruciating now, pregnancy test and tampon aisles taunt me, and pregnancy announcements on social media bring me to my knees. And I imagine that will continue for some time.
So all of this was floating around my head at lightning speeds when I actually let it play out. Letās say I decided not to go through with the surgery and risk it ā decide to have another baby anyway. What exactly was I risking? There was a good chance I wouldnāt have been able to get pregnant anyways, given there was a tumor growing in my uterus. If I did get pregnant, doctors would have no way of tracking the only tumor marker they had, my HCG levels, since they would increase exponentially during pregnancy. I had no idea if there would be risks to the pregnancy itself, but I imagine it wouldnāt have been risk-free. And in the midst of all of this, there was a very good chance the cancer would spread. And if it spread outside the uterus, it would remain the same chemo-resistant cancer it currently was, but there are only so many organs you can remove in your body. I told my doctor that one of my biggest fears in this situation was that we would do the hysterectomy and the diagnosis would be incorrect, so we would do the surgery for nothing. And she said, without sugar-coating, if the diagnosis is wrong and your HCG levels are still elevated, we have much bigger problems to deal with and you probably wouldnāt be able to get pregnant anyways.
My girl and her sweet smile š Photo Credit: @wmw.photo
So, was it worth it? Could I risk everything to potentially carry a future child when I had a baby here who needed her mama? Absolutely not. It was at the same time the easiest and most difficult decision I had ever made. My commitment to being Charlotteās mom is stronger than anything in this world, and thereās nothing that could make me risk that. I have a therapist through the cancer center who has been so fantastic, and she made a good point that though my cancer is extremely rare, infertility is not. If I widen my diagnosis to one of infertility, Iāll feel less alone in this situation (although if anyone out there with my specific diagnosis of PSTT reads this, I definitely want to talk to you!) But she was right ā infertility affects so many women and couples and it can be so devastating. I feel extremely thankful that I was able to carry Charlotte and my pregnancy was uncomplicated, but my pregnancy experience so clearly demonstrates just what I am losing from this diagnosis and sometimes it is really difficult to cope with that.
My oncologist said my ultrasound was relatively normal except for a small lesion that could indicate cell regrowth or could be bleeding from the D&C. She mentioned she could have a room full of radiologists look at my ultrasound and they would all probably say it looked normal, which, looking back now, is a bit terrifying. She said to get repeat blood levels the next week and that she would review my case with the tumor board. Apparently thatās a thing. A bunch of oncologists who get together each week to look at tumors, review cases and decide on treatment plans. Does that not sound like the most depressing weekly meeting you could have on your calendar?
On October 16, I left work at my normal time and took my car to Costco to get new tires. This isnāt especially interesting other than the fact that it took forever and I was still sitting at one of the food court tables at 7:30 when my oncologist called. She asked me what I was doing (should have been a red flag) and when I told her, she said āwell I really wish you werenāt sitting at Costco ā I thought maybe you would be home by nowā, to which I responded āWell, it wonāt be the first time Iāve cried at Costco, so we should probably just get on with itā. I know this is a really dramatic part of my story, but you should know that I had a full-on breakdown in a Costco aisle when I was about 5 months pregnant because it was ātoo loudā. Thank you pregnancy hormones.
Hereās a summary of what the doctor had to say as I furiously scribbled notes, interrupted her with a million questions, and hoped the guy sitting way too close to me (seriously man, there are 30 empty tables around and Iām obviously having an extremely private phone call) didnāt notice me trying to wipe away tears before they hit the paper and made my notes unreadable:
She met with the tumor board that day, reviewed my case, and she made them all vote on the best treatment plan. Unanimously, they voted surgery was the only valid treatment, specifically a hysterectomy. This is definitely a Placental Site Trophoblastic Tumor, we arenāt questioning that anymore. Though some of my blood work was questionable and my ultrasound was unremarkable, the pathology was conclusive. The disease itself it called Gestational Trophoblastic Neoplasia. We could try another D&C and/or chemo, but the tumor will probably either come back or not be affected at all, the side effects will suck, and in the meantime, there is a very real possibility the disease will spread. She has seen three cases of PSTT in 20 years of practicing oncology: 1 had a hysterectomy and is fine today, 1 was diagnosed late, had tons of chemo, and unfortunately passed away.
She said there was nothing we need to do urgently today and we had time to get a second opinion if we wanted one, and she could help facilitate that. She said the low HCG levels are characteristic of this tumor, and donāt really tell us much (i.e. low levels donāt necessarily indicate a small or more treatable tumor). We discussed the surgery a bit more and she said a hysterectomy would involve taking the uterus, cervix, and tubes, but the ovaries would stay in place, and I breathed an immense sigh of relief for two reasons: 1. IVF would still be an option if we wanted to explore a gestational carrier down the road and 2. I wouldnāt go into menopause at age 30. She ended the conversation by telling me that we are definitely calling this malignant cancer, that UVA and Mayo agree, but I should focus on the fact that this looks to be treatable even though this was not the treatment plan we were hoping for.
I hung up the phone and retrieved my car keys from the tire guy who probably desperately wanted to go home at this point. They had called me a few times while I was on the phone, but I ignored it because I really didn’t want to say to my oncologist, āhold on, my tires are ready, but please do go on about my cancerā. I went to the parking lot and loaded my car because, oh yeah, before all this started I bought groceries. The sobbing started as soon as I got in my car. Then the screaming and the banging of the steering wheel. I have no idea if anyone was around me, but they definitely got an ear full. I tried to calm down before I started driving, and I didnāt call anyone on the way home because I knew I wouldnāt be able to hold it together. I don’t remember the drive (but I’m sure it was very smooth with my brand new tires).
Charlotte was still awake when I got home, so I snuggled her and put her to bed, crying the whole time. In the meantime, Mason had to drop off my car for an early morning inspection, so we quickly unloaded the groceries and he left before we could talk (just some advice: maybe donāt schedule so many car appointments the week you are supposed to hear from your oncologist ā it really complicates things). I collapsed on the bed out of exhaustion and pure sadness. Penny snuggled me until Mason got home. And then I knew I had to tell him. I couldnāt figure out how to start. But he knew something was up the minute he saw my face and I just sobbed in his arms. When I could finally speak, I told him everything the doctor said, interrupted by my brief angry/unintelligible interjections of āIām so angryā and āthis isnāt fairā. We came up with a list of additional questions for the doctor and emailed them to her, I got ready for bed, and cried myself to sleep (though it didnāt take long ā I was exhausted). I woke up sobbing at 5am and decided to take the day off.
The oncologist was able to see me that afternoon. Mason met me at the cancer center. And suddenly I felt very grateful we live in a university town with a research hospital and insanely talented doctors, and all I had to do was drive from my office and deal with the annoying parking garage. We spoke with the resident first, went through our history, and she asked what we knew about the situation. Then the oncologist came in and we repeated what we had been told, she looked at the pathology report (which I now know was an interpretation of the Mayo clinicās report from my doctorās office ā not the actual Mayo clinic report) and said their conclusion was a bit āwishy-washyā. She explained she would want to order a few more tests and have her pathologist look at the results before we came up with a treatment plan.
And then I just asked the question because it was killing me ā āSo, do I have cancer?ā She said we couldnāt determine that yet and for now, we could only really refer to this as Gestational Trophoblastic Disease. She explained that Placental Site Trophoblastic Tumors are very slow-growing, and because of this, tend to be resistant to chemo (apparently you need a fast-growing tumor for chemo to attack the way itās supposed to). For women who were done having children, the best course of action would be a hysterectomy to just eliminate the organ in question, but ideally, we would preserve fertility in my case since we wanted more children. We talked through several other treatment options including another D&C, more methotrexate, other kinds of chemotherapy that would have more typical side effects such as hair loss, and of course a hysterectomy was not off the table. She sent us downstairs for full blood work and scheduled an ultrasound for later in the week. We left the office in stunned silence. Telling my parents this information that evening was one of the hardest things Iāve ever had to do. I guess I am privileged to not have understood how difficult it can be to share bad news with your family and friends. Itās gut-wrenching and you just end up feeling like you need to comfort them, through absolutely no fault of theirs. Itās just what happens. I canāt tell you how many times I broke this news and immediately said āā¦but itās OK. I mean, itās not OK. But Iām OK. Actually, I donāt know if Iām Ok or not, but it is what it isā.
I spent the rest of the day researching Placental Site Trophoblastic Tumors and trying to tame the panic attack I felt building up. There is a note in my journal from a few days after my meeting with the oncologist that says ādid more research ā bummed myself out š¦ ā We spent the rest of the week updating family and waiting to hear about test results.
Throughout the nearly 3 weeks it took to get pathology results back, my HCG levels dropped to 46.6. I saw my doctor for a post-op appointment on October 7th where she informed me she had consulted with an oncologist at UVA to make sure there was nothing we should be doing while we waited for the results (there wasnāt) and that she was OK waiting for my results since my HCG was dropping (albeit very slowly).
The next day, she called me and said my HCG had gone back up to 66.6 and my results were in. They had been sent to the Mayo clinic for additional testing (scary) and as I stepped outside of my office, I took a deep breath as I listened to the doctor tell me news that was utterly terrifying and shocking, while at the same time, completely unsurprising and almost validating. She explained that the results indicated a Placental Site Trophoblastic Tumor. She went on to explain that a certain percentage of these tumors are cancerous and some are not (which I now know from my oncologist to be untrue ā they are all cancerous if thatās what is diagnosed). We discussed how it was very likely we caught this early since I had been vigilantly testing for pregnancy while on Accutane and that the oncologist she had already spoken to about my case would be in touch that day to get me in as soon as possible. And then we hung up. And I sat on a picnic table outside my office and replayed the conversation in my head. I looked at the notes I had taken and tried to understand what she had just told me. And then the vortex of thoughts started, some more rational than others.
āSo, do I have cancer?… Whatās going to happen next?… I knew I wasnāt pregnant, I knew this had to be something elseā¦ What the fuck?… How did this happen?… Should I go back inside or should I go home?… If I go home, wonāt I just stress about work and get behind since itās one of the busiest weeks all year?… Will I have to have chemo?…Will I lose my hair?… Will we be able to have another baby?… Iām really scaredā¦ Crap, now Iām crying alone at a picnic table at workā¦ Also, itās kind of cold out hereā¦ I wonder how many people have noticed this weird crying, shivering girl at the picnic table… I should probably call Mason and let him know whatās going onā¦ I wonder if he’s having a busy day at work… I hope this doesn’t stress him out too much… OK, Iāll call Masonā. Welcome to my brain š Itās a scary place on a good day, and this was not a good day.
I called Mason and told him exactly what the doctor had told me. I waited for him to come unhinged, but he never did. He stayed completely calm and kept me pretty calm in the process. We decided it was probably best for me to go back into work in case the doctorās office called so that I would already be close to the cancer center. So, I did. I went to the bathroom and tried to make myself look somewhat presentable. I updated my boss and told her if the doctorās office called, I would just need to go. She and a few other colleagues were in the trenches with me on this journey and kept me sane at work as I ran back and forth to labs, hospitals, and doctorās appointments for two months. I am eternally grateful to them for their discretion, words of encouragement, and shoulders to cry on through this diagnosis. And then I just finished answering the same email I was working on before my doctor called ā as if the conversation hadnāt even happened. It was completely surreal.
They set the procedure up quickly for September 20th with another doctor. A āD&Cā is a dilation and curettage and is typically used to remove tissue from the uterus for diagnostics or clear the lining of the uterus after a miscarriage. Itās done under anesthesia and doesnāt last long. I think I was back in my room about 30 minutes after everything started. In Masonās words ā āI didnāt even have time to get food!ā
The doctor came to talk with us before we were discharged to say everything had gone smoothly and my HCG levels were down to 70, but the initial pathology results were strange. She expected to see something called āchorionic villiā (growths you would find in a placenta and would indicate new pregnancy tissue), but my tissue sample didnāt show that. She said they would send it off for further testing and that they still couldnāt rule out an ectopic pregnancy, which a D&C would not have cured. I reiterated to her again how much I didnāt understand how I could have gotten pregnant in the first place and how none of this made sense, and asked that pathology do whatever needed to be done to figure this out. And then I started researching. And researching. I continued the research I had started the week of my positive pregnancy test, desperately searching for anything that would cause HCG levels to rise if a woman wasnāt pregnant. Thatās how sure I was that this was not a pregnancy. And thatās when I finally allowed myself to read about Gestational Trophoblastic disease, the search result that kept popping up when this first happened and I was too scared to read. And as I waited for my pathology results and continued to live my life, I kept this information in the back of my mind, trying to ignore the nagging feeling that maybe this is what I actually had, telling myself the chances were so slim that I didnāt need to worry about it, but utterly failing at convincing myself.
Every day that week (and many days after) felt like an eternity. I couldnāt eat anything and was having such a hard time concentrating on anything else. On Wednesday of that same week, I went back for repeat blood work and was told my levels had basically remained the same at 132.6. I begged for an earlier ultrasound appointment, and they were able to get me in that Friday (one week earlier than originally scheduled). I was so afraid that if this was a viable pregnancy, the risk to a baby would be so great because of the Accutane that we would be left with very few options. I needed to know what was going on so I could make a decision sooner rather than later.
I donāt want to get too deep into politics here, but I will say that I have always been pro-choice and remain so to this day, and I am profoundly grateful that I did not have to make such a decision in this process. Itās a horrible decision to make and I am so very sorry for anyone who finds themselves in such a position. I know there are many who will not understand that or think that makes me (or people who think the same way) a bad person, but just know weāll have to agree to disagree on that one.
I told my parents what was going on Wednesday night and my Mom offered to come up to be with me. I told her there was really nothing she could do, and I would keep her updated. Friday came and I went to work, nervous all day about the ultrasound that afternoon. Mason couldnāt leave work to come with me, but my Mom called me and said she was on her way to town to go with me. She made it just in time for my appointment, and I didnāt realize how much I needed someone with me until I got into the ultrasound room. It was the exact same room and technician as when I saw Charlotte for the first time and I completely lost it. The technician turned off the screen for me and I held my Momās hand and sobbed the whole time.
Afterwards, we saw the doctor to discuss the results and next steps. He said they could see something small in my uterus but could not confirm if it was an embryo in the process of miscarrying, or if it was just some bleeding and I instead had an ectopic pregnancy. Either would probably be too small to see based on my HCG levels (which were 129.2 that day). We discussed the warning signs of an ectopic pregnancy (specifically acute pain and sudden, extensive bleeding that would warrant a hospital visit immediately as it could indicate the fallopian tube was rupturing). I reiterated to the doctor how hard it was for me to believe I had actually gotten pregnant in the first place, and though he understood, he said it definitely happens and is not the craziest thing heād ever seen. I asked him if we were worried about anything else at this time, specifically cancer, and he said there was no indication of that at this time (and he was right ā there was no way to know at that time and he followed the protocol that other doctors would have as well). We decided to see what happened over the weekend and meet again the next week.
Charlotte and me in NYC in September
The next two weeks were just a blur of blood work and results, waiting for something to happen, and being completely overwhelmed with work (for which, I was actually a bit grateful, as it served as a welcome distraction). I researched miscarriages and learned some can take quite a while to conclude. I had no symptoms that would indicate a miscarriage or any other issues, except for some mild cramping on and off. Life went on during this time – Mason and Charlotte joined me in NYC for a work trip, we went about our normal routine, and we waited for something to happen.
On September 11, I saw the doctor again and my HCG levels had decreased only slightly. We decided to try Methatrexate, a chemotherapy drug that, among other things, inhibits folic acid and can be used as a treatment for a miscarriage or possible ectopic pregnancy. I went to the infusion center to receive two injections of this medication and other than the fact that the injections hurt A LOT, I had no side effects from the medication. I went back a week later and my HCG had dropped to 80, but doctor was concerned they hadnāt decreased more and I was still not having any bleeding that would indicate the conclusion of a miscarriage. Every blood draw, every doctorās appointment had been exhausting, and I was eager to put this behind me and move on. It had been almost a month of back and forth, and the doctor suggested we should go ahead with a D&C. I agreed.
Life One Step At A Time 