Life One Step At A Time

Post-Roe Election Day

This is the post I’ve been wanting to write for months. It’s the commentary that’s been running through my mind since the draft opinion of Planned Parenthood v. Casey leaked 6+ months ago and what’s been churning in my stomach since they day I sat in my office reading the news reports of the overturn of Roe on that fateful date in June. I’m writing it on the eve of the midterm elections, hoping and praying that tomorrow’s results won’t make me feel sicker than I’ve felt for the past 6 months (or really the past 6 years). Every election is important, but this one feels intensely personal.

Last Friday marked three years since my hysterectomy, which I technically count as my cancer-free anniversary. And this year has been especially momentous for us. Our dreams of growing our family are finally coming true thanks to a lot of determination, amazing support, and an angelic surrogate who is beyond words. There’s so much I could say about our journey to get here, and I will eventually share our whole story, but for now, I think it’s more important to highlight the fact that reproductive rights are on the ballot tomorrow, and these rights affect everyone. Women’s bodily autonomy is not a given right now and tomorrow is our chance to fight for it.

As we’ve seen the repercussions of this decision play out and women all over the country lose access to the timely reproductive healthcare they need, I can’t help but think about my own story and everything I went through leading up to my diagnosis. I can’t imagine going through everything I did and having to deal with barriers to care like we are seeing post-Roe. It’s horrific, unnecessary, and 100% preventable. I also think about everything I’ve chosen to go through post-diagnosis: three rounds of IVF, genetic testing, and embryo freezing; all of which are currently being questioned by politicians who have clearly done no research on any part of the procedures nor once set foot in a fertility clinic, let alone bothered to pay attention in middle school health class. I won’t get into our IVF journey in this post, but it’s also squarely under attack right now, and something I feel very passionately about.

A couple of points I want to make off the bat: pregnancy is not a health-neutral state; meaning if you are pregnant, there are any number of things that could go wrong or harm you in some way. And I don’t say that to scare anyone, but to be realistic about the risks involved in pregnancy, something that many people today absolutely refuse to admit. Pregnancies end for any number of reasons, wanted or unwanted, and reproductive care is healthcare no matter the reason. Those decisions need to be made between patients and their doctors, and no one else. I just can’t imagine thinking about the political landscape at any point leading up to my diagnosis (thought I’ve thought about it quite often through my IVF journey) – my cancer journey was hard enough as it was without throwing politics into the mix. My bottom line is there should not be a scenario in which your political or religious views impede my reproductive rights or bodily autonomy.

I want to take a step back in my story and just highlight some of the details that I’ve been thinking about the past few months. If you have read my previous posts, you’ll know my story started with me on a medication called Accutane. It’s an acne medication that is very effective, but can cause severe birth defects to an unborn child. When women take it, they have to use two forms of birth control, visit their dermatologist for monthly pregnancy tests, and take a monthly quiz about the medication risks (as far as I know, men on this medication don’t do any of this). Before I knew that I had a tumor in my uterus causing my HCG levels to rise, I missed a period in July and had a positive pregnancy test in August. The only information I had to work from was I was taking a medication that caused severe birth defects and all signs pointed to a pregnancy. And yet all anyone at my OB’s office would say to me was “congratulations!” and “we can get you in for a pre-natal appointment in 10 days”. The amount of sobbing and convincing it took to get anyone to take me seriously enough to get me in for blood work that day would have probably gotten me arrested had I been in a public place. But let me just pause here and say this is situation number 1 of many where Roe being in place was a saving grace for me. My main concern that day was getting answers quickly, not the gestational age of a potential embryo I may have been carrying and whether or not that fit within an ill-defined arbitrary abortion regulation of a state in which I happened to be unfortunate enough to live in.

When I was finally seen for bloodwork and my HCG levels came back elevated, the doctors told us we were likely looking at an early miscarriage or ectopic pregnancy, but they weren’t certain. Mason and I had to have one of the hardest discussions we have ever had, in which we decided if this ended up not being a miscarriage, we would need to move forward with an abortion due to the severe birth defects caused by the Accutane. We were not intending to get pregnant (in fact, we were doing everything we could to prevent pregnancy) and we were not in a position at that time to support a pregnancy or child with severe birth defects, nor did we think it was fair to that child or to Charlotte. It was a horrible conversation to have on top of not knowing what was going on with my body, but it was necessary and I’m so thankful we had that option. I keep thinking about how terrified I would have felt if someone told me at that point that option was illegal or off the table for me.

Because following the “miscarriage” and waiting for it to resolve obviously didn’t work, our next step was an infusion of methotrexate, a chemotherapy agent often given to women who are thought to be having an ectopic pregnancy as it inhibits the production of folic acid in the body, a nutrient needed to sustain pregnancy. This is technically a medically-induced abortion to treat a non-viable pregnancy (ectopics are always outside the uterus and never viable). Methotrexate is also used to treat a variety of other illnesses, including Rheumatoid Arthritis, and some women with this illness report that they are having trouble securing their medications from pharmacies who won’t fill it for them, given it’s other use in treating ectopic pregnancies. I just can’t imagine my doctor telling me they had a treatment that would help my situation, but they weren’t going to be allowed to give it to me because of some law politicians in my state had deemed more important than my health and safety.

Because methotrexate obviously didn’t work, our next step was a D&C. A dilation and curettage. Also technically considered an abortion procedure, though in this case, used to treat a miscarriage. A procedure typically done under anesthesia where they dilate the cervix and scrape the lining of the uterus. My tissue was sent to pathology immediately after surgery because they could tell something was up (scary news to wake up to), but I was oddly comforted by the fact that someone was finally listening to me. I was officially diagnosed when this pathology came back a few weeks later.

I just can’t help but think about how all of this might have played out in today’s world, in a state with abortion bans or restrictions. Since we couldn’t easily date the “pregnancy” by ultrasound (they couldn’t see much – we know now because they were actually looking at my tumor), there would have been no way to prove how far along I was. There was never a heartbeat (because it wasn’t actually a pregnancy), so had any of these bans or restrictions been in play, all of my treatment plans would have been murky at best and would have certainly slowed down my diagnosis. By the time my surgery took place in November, 2019, my tumor had grown well into the muscle of my uterus and was on it’s way to spreading. I didn’t have any time to waste in getting diagnosed and treated. If this cancer had spread outside my uterus, this chemo-resistant cancer would have become a whole different ball game for us. I thank the universe every day that wasn’t the case and I’m living to tell my story.

Tomorrow, I’m going to vote blue so my story can mean something. I’m voting blue so my daughters don’t have to grow up in a world with fewer rights than their grandmothers. And I’m voting blue to keep access to reproductive rights available to any and all who need or want it. I implore you to join me. #RoeRoeRoeYourVote

What are you doing New Years Eve?

Well, it’s been a year. In so many ways, it’s been a year for so many. It’s been a season of first anniversaries related to my diagnosis, and they were all pretty exhausting. Grief is not linear, the first year is hard (especially in the middle of a pandemic), and some days it feels like we are right back where we started it in our recovery. But as of December 17^th, I am officially one year NED (no evidence of disease)! Instead of monthly blood draws and quarterly exams, I now have quarterly blood draws and exams every six months (I protested this strongly and lost). This will be the first month in 15 months that I haven’t had my HCG level checked and it’s taking all my willpower not to MyChart my doctor right now and beg for labs to be sent in. I’ve gotten so used to the comfort of normal blood results at the end of each month as a way to calm my anxiety about my cancer that this new schedule will take some time to get used to.

My oncologist is very optimistic about my prognosis – she feels like the hysterectomy was a curative surgery and we caught this early enough that we shouldn’t see this come back. We need to stay vigilant for a bit of time because this is a slow-growing cancer, however, which means she’ll be my best friend for the next 4-5 years. So, on the one hand, it’s super comforting to know this oncologist at the top of her field at one of the best hospitals in the country feels really good about my diagnosis and I can probably take stock in the fact that she says my cancer is most likely cured.

On the other hand, and I imagine this is no different than anyone else who has ever been diagnosed with cancer, it feels really hard to trust my body again – and that mistrust bleeds into different parts of my life. It’s more than reading into and worrying about aches and pains and symptoms, though I do my fair share of that, but sometimes it’s difficult to stop myself from thinking the worst. My doctor said if the cancer was to come back, she imagined it could be sometime between the one and two-year mark based on the pattern of growth. Cue anxious and irrational thoughts…

Example: as we were putting the lights on the Christmas tree this season, I told Mason exactly how I like them strung (deep in the tree and wrapped around the branches, not just circled around the tree – it takes a lot of lights and it’s a pain in the ass to get off, but it makes for a very pretty and well-lit tree). He rolled is eyes because I tell him this every year (and he’s usually the one who has to unstring them before we recycle the tree, so he’s well-aware) but I told him I just wanted to make sure he knew in case he needed to do it himself one year. And he looked at me with a knowing look because he knew exactly why I was telling him. And then I went to the bathroom and sobbed. And then, because we weren’t finished decorating the Christmas tree and Charlotte was very excited, I took a few deep breaths, wiped my face, and continued with our evening. Scheduling grief can be tricky, but sometimes you actually need a toddler banging on the door ready to decorate the Christmas tree to snap you out of your mood 😊

Just a girl decorating her tree (with an appropriate amount of lights!)
Photo Credit: wmw.photo

The fertility stuff is all just blah at this point and I’m still feeling stuck and bitter about it. I had a lot of work to do on the acceptance of my cancer diagnosis before I could really start to work on anything else and I feel like I’m making a lot of progress there, so hopefully I can really start to work on some of my attitude toward the infertility issues. My therapist and I are working toward “radical acceptance” of my situation – a complete acceptance of the facts and reality of a situation without judgment. Yeah, not quite there yet – still pretty judge-y. But I’m working on it. I’ve been getting versed in some of the support and advocacy work in the infertility community, and though I do have to remind myself to take a mental break from it all, it has been a very helpful and supportive place and has given me back a semblance of control in a situation where I have felt like I’ve had very little.

One interesting thing I’ve discovered about myself is I don’t feel totally comfortable calling myself a cancer survivor because I didn’t have a typical cancer treatment experience (irrational thoughts like “have you suffered enough to call yourself a cancer survivor?”), and I don’t feel like I totally fit in the infertility world either (for a lot of reasons, and I’ll probably do a whole post on secondary infertility later on). So it’s been tough to find a place where I fit, and going into quarantine 4 months after my surgery didn’t help.

Other little things that I’ve been thinking about the past couple of months:

I have a new way of estimating how long it’s been since I’ve used a purse or a bag – if I find tampons in it, it’s been over a year and it goes in the sell or giveaway pile (if it’s really cute, I might think twice – because it’s COVID and where would I be using a cute clutch right now?) But seriously, I had tampons in every single bag, drawer, glove compartment (wtf?) and it’s getting really annoying still finding them over a year after my surgery. Side note, I also had really big maxi-pads in my center console in my car just in case my water broke while I was driving (like that would have been my main concern at that point, and also like the maxi pads would have helped?) Other than my cancer being cured, not having a period is the only good thing to come out of this whole situation.

Someone else’s joy is not my loss – I’ve been working really hard to disassociate the two. This has been especially hard with the flood of pregnancy announcements in the past few months (pandemic babies are a real thing apparently). Lots of healthy babies on perfect timelines with reasonable budgets– this is where my “radical acceptance” becomes difficult 😊 But someone else’s joy has nothing to do with my loss, and pregnancy news is joyful. It should be celebrated as such!

I think one thing that is really standing in my way of radical acceptance of the full reality of my diagnosis is the cruel irony that pregnancy is what caused my cancer and infertility. I’ll write more about this later when I talk more about what I have learned about secondary infertility, but this is something my therapist and I have been working on. She has really helped me start to put this in perspective a bit though, just by asking if there was anything I would have done differently if I could have seen the future. And, of course, the answer is no (other than maybe getting my HCG checked regularly after Charlotte was born!) So there’s really no sense in focusing on this fact, as unfair as it might seem.

So what are we doing this New Years Eve? We’re taking stock. Everything was tested this year. We’re taking a minute to be grateful for what we have and thanking each other for the grace that was shown in the tough times (and will be shown in the tough times to come, no doubt). We’re frustrated that we are still feeling stuck in many ways. We’re so happy that we’ve made it a year with no evidence of disease – that’s a huge milestone and we know that’s something to be really grateful for. We really want to give Charlotte a sibling, but we feel like we have some work to do before we get to that point, and we know it won’t be an easy journey to get there. I’m trying not to let myself spin out too much about the age gap anxiety – there’s no such thing as a perfect age gap.

We’re currently waiting for frozen pizza to cook and watching Mickey Mouse Clubhouse – because we have a 3 year old and that’s what New Years Eve looks like in our house in the middle of a pandemic. COVID is still making me super anxious, but I’m trying not to let Charlotte in on too much of my anxiety. Her main concern these days is learning how to pedal her new bike and calling out family members who are speaking with any bit of food in their mouths – “Dad, you have to chew, THEN talk!” Penny is whining because she wants to be fed. Laundry is everywhere upstairs. The Christmas toys are still exploding under the tree. The Christmas decorations are starting to drive me insane. I’m getting really anxious about how much work I need to jump back in to on Monday. And despite my Type-A personality (and blood type) I’ll wait for my next appointment for my bloodwork 😊 Happy New Year!

24. Diagnos-aversary

Today is my diagnos-aversary. I haven’t googled that to see if it’s an actual phrase that people use, mostly because I know I’ll go down the rabbit hole of reading people’s sad diagnosis stories. But October 16th last year, after a very long two months of doctors appointments, blood draws, procedures, stress, and tears, I was diagnosed with cancer. And it is still beyond my comprehension to this day that I had cancer. I have to actually say it out loud sometimes because it’s still so weird to me. “This time last year, I had cancer”. I felt a little down today – it was kind of a tough day. We are right in the middle of one-year anniversaries for everything that happened last year (first red flag that something was wrong in August, miscarriage diagnosis in the beginning of September, D&C in late September, diagnosis in October, surgery in November, remission in December) so it’s been emotional. But then I reflected on the details of my diagnosis story, and I actually laughed out loud for the first time all day. Like, who gets diagnosed with cancer at Costco, waiting for new tires? Seriously, is there a forum anywhere to discuss the most inappropriate place you have received devastating medical news? For a long time, I couldn’t go back to Costco. Something about the sounds and the smell of the food court brought me immediately back to that night. But I just can’t resist their deals on La Croix and Skinny Pop – so I worked through it.

I wouldn’t have made it through the past year without my family. Mason is my cheerleader, gives me perspective when I need it most, and loves me through all the good and bad days. Charlotte is my go-to for a dose of cuteness, a sweet snuggle, or a good belly laugh. Our parents and siblings have checked in with us, fed us, babysat our kid, walked our dog, and lent their shoulders when we needed to cry and vent. I consider myself very lucky to have the support system that I do.

We’re still working through some fertility and family-building options for the future – a lot of things happening simultaneously in that department, but none of them quickly. COVID doesn’t help. I’m still getting my HCG checked regularly to make sure everything is as it should be. I have a standing lab order for the end of every month, and it’s the only thing that I don’t actually have to put in my calendar to remember. Something in my mind just kicks in the last week of every month and I know I need to get to the lab. It’s become so routine. I’ve managed to completely stress myself out over our likely soon-to-be Supreme Court justice and the future of reproductive rights for women across the country. I’ve gotten semi-versed in some of the advocacy work going on in the fertility world (there are currently 5 bills in front of the Virginia legislature that touch on reproductive rights and fertility insurance coverage). It’s confusing and stressful, and I really don’t have time for it, but I think it’s interesting and important, and it gives me a semblance of control over a situation that has left me with very little control. I’ve also been listening to a lot of infertility and surrogacy podcasts. I definitely have to check in with my emotional state before listening to some of those, but I have found them helpful and comforting for the most part. There’s a big community of infertility warriors out there and it’s been a very interesting journey to hear some of their stories and try to understand where I fit in the broader picture. More to come soon, but for today, I am grateful, hopeful, still a little heartbroken, but taking things one day at a time 😊

23. So, what now?

In terms of our infertility journey, we are working towards taking action, but are basically nowhere at this point, waiting for 2020 to get its shit together before we make any solid moves. I feel panicked about the time passing because the process can take a while. 31-year old eggs are theoretically better than 32-year old eggs, though my oncologist has told me to chill out about that specific worry.

So, what do we know?

We know that we have made a decision to move forward with IVF sooner rather than later (as soon as we have the finances figured out) just to check that off our list and clear the hurdle. Then we’ll turn our attention to the surrogacy question. In the mean time, we are also researching our options for adoption.

We know that we are feeling encouraged by my oncologist and her optimism about the low probability of the cancer returning.

We know Charlotte is growing up way too fast and challenges us to be the best parents we can every single day. She makes me want to be a better person. And the kid has never been funnier.

Mostly we know that we can get through this challenging time. This diagnosis was the most challenging thing I’ve ever experienced. The times we are living in right now are scary and uncertain, but we are just taking it one step at a time. We are not in any hurry to get back out there right now – I have asthma and had lung surgery many years ago, so breathing is sometimes difficult on a good day and I’m not super anxious to increase our exposure to this virus. We have really missed our families – it’s been an emotional time to be physically distant from them. For now, we’re just trying to do the next right thing for our family.

Taking life one step at a time seems difficult right now – there are major things happening all around us, all over the country, all over the world. Sometimes our issues seem so trivial in comparison. It’s been a really hard year for a lot of people. I get anxious about where we go from here and how long it might take us to get there. But I’m also optimistic. I look back at some of the challenges we have overcome and think “we can do this – we can figure this out and we’ll be a better family for it in the end”. Maybe it’s naive, but I like to think the same about people – we can do this together, one step at a time, and we’ll be better for it in the end.

22. Cancer and Fertility in the time of Covid

Since my surgery, I have had monthly blood draws to test my HCG levels (my tumor marker). Currently, my blood draws consist of a screening at the front door of the lab building, a temperature check, a mask, no sitting in the waiting room, lots of hand sanitizer, and they usually have me out in less than 10 minutes, all of which I appreciate.

I had a virtual visit with my oncologist in May (talk about things I never thought I would experience). She said she would leave it up to me whether or not we continue with monthly blood draws or change that to once a quarter. I have no problem with getting my blood drawn as much as possible for doctors to tell me there is no sign of cancer infiltrating my body, so we’ll just keep up the monthly labs. Blood draws aren’t so bad and I’m pretty used to it. When we get to the one-year mark in December, hopefully things will still look clear and we’ll talk about an altered schedule. My next appointment with her is in September and I’m hoping I can see her in person.

My oncologist was very open with me and said that she really felt like I was done, this was cured, and we could be pretty assured that the cancer wouldn’t return. However, if it did return, because it’s so slow-growing, we would likely see it sometime between the one and two-year mark. So I’m just emotionally preparing for a couple of anxious years. We have to keep living in the mean time (or as much as we can in our current quarantined existence). Charlotte deserves a mom that is focused on her and her development, not cancer, not IVF, not surrogacy. It’s a daily struggle and an active exercise to remind myself to be present and grateful, and as difficult as working from home with a two-year old is sometimes, I’m so thankful for this unexpected extra time we have together.

undefined

Our infertility journey feels like it’s just beginning. We know we want another child. At this point, we are leaning towards IVF and gestational surrogacy. Every time I start to research the process, I just get sad and angry that I can’t just do this myself. It’s a legal nightmare, an emotional roller coaster, an astronomical expense, and really just sounds like a huge pain in the ass. At the beginning of the quarantine, they weren’t even allowing new fertility treatments to begin, but I think clinics are opening back up now. There are a lot of grants and scholarships for people struggling with infertility, but many of the cancer-related ones are on hold or being redirected right now, as they should be (ex. some are going to patients currently undergoing treatment who have lost their income). So I feel like I’m in a little bit of a holding pattern on things right now until we learn more.

I’m still trying to understand gestational surrogacy in Virginia. One thing I’ve really been trying to drill down on is the fact that Virginia doesn’t allow pre-birth orders: basically an agreement between a surrogate and intended parents declaring that the intended parents are the legal parents of the child, not the surrogate. Seems like a reasonable thing to work out before the birth of a child that is biologically yours (or even if the child wasn’t biologically yours but you had an agreement with a surrogate), but they aren’t allowed in Virginia and I haven’t really figured out why. As it stands now (as far as I can understand), the gestational carrier’s name goes on the birth certificate after the baby is born and they can’t “give up” parental rights until four days after birth, which seems like a great way to re-traumatize an intended mother who can’t carry a child herself. Intended parents have to petition and pay big money to have the birth certificate changed and the whole thing makes medical decisions for the baby extremely complicated in the hospital. I’m already really angry about this and I haven’t even gotten into the weeds of surrogacy research – I want to find out more to understand why this law is in place. I did speak to another local mom who has been through the whole surrogacy process and she gave me a lot of valuable insight into everything she went through – the good, bad, and very expensive. But in the end, she said the struggle was totally worth it. I’m just trying to hold on to that sentiment when the research stresses me out.

21. 2020 so far

2020. You’ve seen the memes. Definitely a year for the history books. It hasn’t been an easy 6 months for anyone.

In January, we lost one of the sweetest souls I have ever had the pleasure of knowing. Mason’s grandmother, Alice, was an angel on earth if I have ever met one. She was a kindergarten teacher for over 30 years and had the kindest, most sincere way of connecting with anyone she met. She really never met a stranger in her life. She loved butter in any form, always tried to feed anyone who walked through her door no matter what time they arrived, and cherished her family above all else. I miss her dearly and would love nothing more than to hear her voice right now. Sharing my diagnosis with our families last year was one of the hardest parts of all this, but she handled it with grace and composure, even as her health was failing her. I hope she realized how much love and laughter she brought to our family.

I pushed things a bit too hard in January – I was feeling pretty good in my recovery and got back to my normal routine too quickly and suffered a lot of physical pain as a result. It was a tough, but serious reminder that I was not in charge. Because of this, I really wasn’t allowed to help with our move in February. Mason took the lead on everything and did a great job, and I spent the majority of the time feeling anxious and guilty I couldn’t help (though it was nice to have an excuse not to lift boxes). We love our new house! It’s been a few months and we are still unpacking and organizing, but it’s a great fit for us and I’m really glad we moved before everything shut down.

At the end of February, we lost a beloved uncle – my uncle Bob. He was a veteran, the oldest of five children, a father, grandfather, uncle, great uncle, and friend. He and my Mom were very close even though they were 15 years apart. He helped me move twice when I was in grad school (both times in a sweltering and humid August in Virginia) and vowed never to help me again 🙂 He died of cancer. I hate cancer.

In March, the world shut down and we are still trying to figure out what that means for our family. In May, the world seemed to wake up. We have been focused learning about and discussing social and racial justice issues in our family. We have been doing a lot of reading, evaluating, researching, and soul-searching.

20. The aftermath

It’s been just over 7 months since my surgery and 6 months since being labeled “cured”. Once in awhile, I have some pain and discomfort (things just take a while to settle when you have an organ removed I guess?) but overall, my physical pain is mostly gone. Emotionally, however, I still have some work to do.

I have been trying to name feelings as I notice them (still trying to find a therapist that takes my insurance and has availability right now, so I’m just doing some of the pre-work for therapy now!) Generally I find myself feeling some/all of the following at different points throughout each day: Anger, jealousy, hopelessness, hopefulness, anxiety, guilt, and relief. I am realizing we really had very little time to adjust to this diagnosis before surgery, and thus really didn’t have time to do the emotional work. I just keep thinking about how quickly the process from totally fine to cancer survivor was. Less than three months. And I’m so grateful we were able to get to the survivor point as quickly as we were – that’s not the case for all cancer patients. But it just left us reeling a bit, and I find we are having to deal with a lot of the emotional stuff now.

I don’t really know what I expected in terms of my emotional recovery, but it has surprised me how emotional I still am about everything. Things that I didn’t even notice before now bring me to tears. I feel angry a lot of the time. Pregnancy announcements, maternity clothes, pregnant women, families with multiple children, pregnancy tests, tampons, breast pumps, etc. are all triggers for me. I hate that they are, it really complicates my life, I hope they won’t always be. But right now, they still hurt. I don’t really sleep well anymore – primarily because we really need a new mattress, but I just find it difficult to make it through a night without waking up thinking about something related to my diagnosis or fertility issues. Sometimes I dream I am pregnant, and that leaves me in a funk for a while when I wake up. I guess not having a period has been nice – but, fun fact, because I still ovulate, I still get PMS. I just have no idea what’s happening because I have no period to clue me in as to why I spent the previous three days being an emotional wreck about everything.

Mason just listens when I get in these moods and lets me cry through them for the most part. Sometimes he interjects with “hey, remember you don’t have cancer, though”, and I know it’s not a criticism of my emotions, but more of a reminder to focus less on our loss and more on how lucky we are to have survived this. We figured out something really important just after my surgery that has helped us understand each other’s perspectives more. When I was diagnosed, I immediately zeroed in on the infertility that would result from the treatment, whereas Mason immediately (and probably more rationally) focused on the cancer diagnosis. He was scared and I was angry. And because that’s how we both went into the surgery, that’s also kind of how we have been dealing with the aftermath. He feels relieved that the cancer part seems to be behind us now, and though that is a relief for me, I still feel very angry about the resulting infertility, especially as we get into the research a bit more and really start understanding what it’s going to take to grow our family.

19. Where are we now?

Today marks 6 months since I was officially deemed “cancer free”. The next few posts have been written in bits and pieces over the past 6 months as the world has turned upside down in more ways than one. Currently, it’s mid-June. We are still mostly in quarantine doing what we can to avoid Covid-19, I am working from home, Charlotte is out of school, all practicing social distancing as much as we can. We are watching, listening, learning, and trying to speak up as this country once again battles its racial and social justice demons.

Interestingly, Facebook informed me that three years ago today, Mason and I announced we were pregnant with Charlotte. We also got engaged seven years ago today. Time is strange and it moves too fast.

Maybe it’s the title of this blog making me keenly aware of things that fit the mold, or maybe it’s because I’ve been quarantined with a toddler for the past three months and watched Frozen 2 about 100 times, but I keep thinking about the phrase that is often repeated in the movie “just do the next right thing”. It’s a prevalent theme in the movie and even has a song devoted to it. But it’s also how we’ve been living our lives since my diagnosis, and especially in recent months since we can only make decisions based on the information we have at the time. It’s not that we don’t make plans for the future – we do. But because we have lived through the unexpected, dealt with a life-altering diagnosis, and come out on the other side, we also know that plans change and you have to change with them or you are going to be dealing with a lot of unhappiness in your life. I have personally found that focusing on “the next right thing” has been the most helpful way to move forward. I’m absolutely still in the anger phase, but I can feel myself channeling that anger into action, into decisions, into next steps. Time will tell where we go from here.

18. Where do we go from here?

On December 17th, I saw my oncologist for my 6-week appointment. My mom came with me to help me remember what the doctor said (and because I was really nervous and Mason couldn’t leave work to come with me). After a quick check with the nurse practitioner to make sure everything was healing as it should, my doctor came in. She went back through all my test results since surgery, reiterated that we absolutely did the right thing, and then she said the words that I wasn’t expecting, but so desperately wanted to hear: “I’m comfortable using the word ‘cured’ in your case”. And cue the tears.

We are still in a “watching and waiting period right now”, and we will be for some time. I will have monthly blood work to check my HCG levels, and I will see my oncologist every 3 months for at least a year. If anything looks off, we’ll be having a different conversation. But for now, my levels are normal, my scans are clean, and I’m focused on healing, both physically and emotionally.

There’s a whole other guilt factor that I have felt creeping in lately about calling myself a “cancer survivor”. First, it’s still hard for me to trust that I am completely cancer-free. I don’t know if I will ever trust that again. Second, I know there’s no “normal” cancer experience, but mine just feels strange (maybe all cancer survivors feel that way?) I am lucky I didn’t have to go through chemotherapy, radiation, or any further surgeries. I have my hair and my strength, my recovery has been challenging but manageable, and the time between my diagnosis and cure was minimal. I’m extremely thankful for all of this and I realize many others have a very different experience.

I don’t know exactly where we go from here. Currently, I’m wondering how long I can leave my Christmas tree up without it becoming a fire hazard. We’re in the process of buying a house and hope to move at the end of January. I go back to work full time soon. I’m wondering what Charlotte will do to make me laugh tomorrow. I’m worried I don’t take Penny for enough walks. And I’m hopeful my husband knows how much I love and appreciate him, because I’m sure I don’t always show it.

The loss from this diagnosis is always on my mind. There is always something that reminds me of what I have lost, what I can’t do anymore, what I will never be able to do again. And then I watch Charlotte master a skill she’s been working on for a week, I see her start a new school, I watch her open presents at her 2nd birthday party, and I realize the loss is worth it because I’m here. Sometimes life looks completely different through the lens of a cancer diagnosis, and yet other times, I find focusing on the little things in life, the normal, everyday, mundane things is what makes my world go round. One step at a time.

17. Unknown Future

I wrote this post on the eve of my 31^st birthday. My 6-week appointment was coming up and I was feeling stressed about the results and the impending holidays.

For those that know me, you know I hate my birthday. December birthdays suck in general (there’s way too much going on with the holidays and it tends to be a stressful time) and on top of that, crappy things just tend to happen on and around my birthday (I’m talking car accidents, dog bites, family stuff). But I’m actually looking forward to this birthday. 30 was not my best year and I’m kind of excited to leave it in the past. We don’t know what the future looks like (does anyone, really?) All we can say right now is I definitely had cancer, that my HCG levels are back within a normal range and currently, there is no indication cancer has spread to other parts of my body. I have a follow up appointment with my oncologist coming up soon and then I imagine I’ll have to be monitored for some time. I know that means I won’t really be able to rest easy for some time, but we’ll just have to take that one step at a time. As for future children, I think we’ll have to follow the same formula. Our focus right now just has to be on health and recovery (though that hasn’t stopped me from starting to research options – I can’t give up all my obsessive control-freak tendencies just because I have cancer!) So, more to come, but for now we are ready to enjoy the December birthdays (we have 5 in the immediate family, including Penny) and holidays with friends and family and look forward to heading into the New Year with a healthier outlook.