12. Coping with the plan

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 oncologist’s 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 – 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 “screw that, let’s schedule it for today. I’ll sign whatever documents you need”. 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 didn’t cover it and I had to pay that out of pocket? I would have been pissed, but it wouldn’t 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 didn’t have all those things, or didn’t have insurance? I am so thankful for the healthcare I received and every treatment that was available to me, but I can’t begin to comprehend our healthcare system and how this diagnosis could have completely wrecked us financially if we didn’t 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 haven’t 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. It’s such a hard thing to talk about, so I wasn’t sure she would want to discuss with a complete stranger, but she couldn’t 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 😊

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 didn’t work and you really increase the risk of disease spread every time you do it) and chemo (it’s not likely to work, you’re going to feel like shit, and in the meantime, it might spread). We scheduled the surgery for November 4^th 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 didn’t want to do it.

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. It’s 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 – 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. It’s 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 – it’s never been appealing to me and it really stresses me out (weird that I’m now writing a blog to share about this crazy experience, but I’m 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. I’ll never take another pregnancy test, never feel the flutters of little baby kicks inside, never wear my cute maternity clothes again, Charlotte won’t get to experience the joy of putting a hand on my stomach and feeling her sibling move around, I’ll never get to attend the sweet prenatal yoga classes that got me through my pregnancy. As difficult as labor and delivery were, I’ll never get to go through it again. I’ll never labor for hours and lock eyes with my baby as soon as it’s 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. Let’s say I decided not to go through with the surgery and risk it – decide to have another baby anyway. What exactly was I risking? There was a good chance I wouldn’t 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 wouldn’t 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 wouldn’t be able to get pregnant anyways.

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 Charlotte’s mom is stronger than anything in this world, and there’s 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, I’ll 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 – 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.