Hmmmmm....

As I sit down to write this post, I have had the benefit of a full week to process the news I received from my doctor at what I thought was a routine follow-up visit. I am writing this particular post with no intention of ever actually "posting" it to the blog for everyone to see. It is extremely personal, but I know writing will help me to wrap my hands around the significance of the news in a way that will allow me to more productively process what it means.

My first response after receiving the news was... well, nothing, really. I guess this is what they call shock. All I could do was sit perfectly still, stare blankly at the doctor as his mouth continued to move with what undoubtedly was important information that I needed to understand, and just breathe.

After some amount of time, I was able to focus slightly on what the doctor was saying and caught snippets like "triploidy", "molar pregnancy", "partial", "genetic defect", "malignancy", "cancer".

I left the doctor's office with an understanding of five things: (1) I had had a miscarriage (mercifully) because the fetus had a rare genetic defect called "triploidy", (2) this led to a partial molar pregnancy, (3) one possible outcome of a molar pregnancy is continued growth of the abnormal cells leading to a form of uterine cancer, (4) under no set of circumstances could we even think about (let alone attempt) to get pregnant again for about a year, and (5) I had to somehow find a way explain all of this to Casey.

After a considerable amount of research over the past week, I at least have a basic understanding of what these unknown terms mean.

"Triploidy" is an extremely rare and lethal chromosome abnormality caused by the presence of an entire extra set of chromosomes. A fetus with triploidy has 69 chromosomes, rather than 46 (23 from each parent). Very few infants with triploidy survive to term. Of those that do, most are stillborn and those that are born alive have severe defects and die shortly after birth (the longest life span of record is 10 months). By its very nature, triploidy is incompatible with life. This is why I say that mercifully my pregnancy resulted in a miscarriage. If it hadn't, the chromosomal abnormalities would have been found in the early screening tests that Casey and I would have opted to do, and then we would have been faced with the decision of whether the pregnancy should be terminated or if I should continue to carry the baby knowing full well that the baby had been given a death sentence before it even had a chance at life.

The good news is that triploidy is a sporadic and accidental (random) event, does not signify that there is anything wrong with the genetic make-up of the parents, and there is no increased recurrence risk in future pregnancies.

The bad news is that in my case, the triploidy resulted in a molar pregnancy. Molar pregnancy (also called a hydatidiform mole), a form of gestational trophoblastic disease (GTD), is caused by an abnormally fertilized egg. The fertilized egg does not grow as it should and a genetic error causes abnormal cells to grow and form a mass of abnormal placental tissue in the uterus. There are two types of hydatidiform moles: complete and partial. In my case, it was a partial hydatidiform mole, meaning that a fetus (albeit an abnormal one with fatal defects) existed but the placenta developed into an abnormal mass of cysts.

In reading up about molar pregnancies, I have found that some common symptoms include extreme exhaustion (I had been very tired), severe nausea (which explains why I thought I was experiencing morning sickness this time around unlike when I was pregnant with Riley), cysts (one had been discovered in my 8-week ultrasound, but at the time was thought to be a common ovarian cyst since the fetus had a very strong heartbeat), vaginal bleeding (had this but was minimal and again, since the fetus had a heartbeat, was thought to be no big deal), and a growth-restricted fetus (which explains why my due date was moved back by 8 days after the ultrasound indicated the fetus was smaller than expected based on the first day of my last period, which is the normal indicator of due date).

The thing that makes all of this particularly confusing to me is that most of the "symptoms" also occur in normal pregnancies. So if I ever DO get pregnant again, I believe I will live in a constant state of paranoia. But let's not get ahead of ourselves...

The suggested form of "treatment" for a molar pregnancy (either complete or partial) is a D&C (outpatient surgery, the details of which are too sad to even delve into). This is also the "treatment" for an incomplete miscarriage, also called a missed abortion (where fetal and/or placental tissue remains in the uterus - as has been the case in both of my miscarriages). The good news, again, is that I/we did not find out about the triploidy or molar pregnancy until AFTER the D&C had already been performed (this was all medically discovered in the pathology examination of the tissue taken during the D&C), so we did not have to make any decisions about what to do. This may very well be the one time in its attempts at pregnancy that my body did me a service, and that it really did all "happen for a reason" and "was for the best" as many well-meaning people have told me. But truthfully that doesn't make the news any easier to swallow or any less painful.

As if the miscarriage, the resultant diagnosis, and the insane medical bill we received for a surgery that I never even wanted weren't bad enough, the truly horrifying thing is that all of this could have very serious future implications. And that's where we get to the "C" word that I referenced hearing the doctor speak of above.

You see, hydatidiform moles are not cancerous. They can, however, develop into cancerous GTDs. Typically, the D&C removes the molar tissue. However, it is possible for some of the abnormal cells to remain. This is called persistent gestational trophoblastic disease (persistent GTD), and it occurs in as many of 10% of women after a molar pregnancy. There seem to be 3 types of persistent GTD: (1) invasive moles (a hydatidiform mole that grows into the muscle layer of the uterus and can metastasize to other parts of the body, typically the lungs), (2) choriocarcinoma (a malignant form of GTD that grows quickly and spreads to organs away from the uterus) and (3) placental site trophoblastic tumor (PSTT, a very rare form of GTD that develops where the placenta attaches to the uterus, but that typically does not spread to other sites of the body).

The relatively good news about all of this is that the cure rate for this type of cancer is very high (virtually 100% if the cancer hasn't spread beyond the uterus and 80-90% when it has spread to other organs). Those are odds I can live with, although to save my life I may have to undergo chemotherapy (typical course of treatment) or a hysterectomy (much more rare), neither of which excite me much. I am 33 years old, living the kind of life that most people dream about with a husband I love, a son that I adore and dogs that can always bring a smile to my face. I have always been healthy, I have faced very little adversity, I grew up in a home with amazing parents and a sister who has turned into my best friend. I have traveled a lot. I have had a lot of fun. I am surrounded by good friends.

Under no circumstances am I prepared to die young.

And yet, even though the odds of survival are very good, I can't help but let my mind drift to ugly places where I start thinking about Riley being left without a mother, Casey remarrying (which I have already come to terms with and absolutely know I would want him to do), Winston sleeping on my empty pillow. I know these thoughts are unproductive, and fortunately they are fleeting, but they are still there and I'd be lying if I said they weren't.

The best indicator of persistent GTD is an hCG (human chorionic gonadotropin) level that remains high after the mole has been removed. The hCG hormone is produced by the placenta during pregnancy, and if the level remains high or does not decline, it is a sign that molar tissue remains and continues to grow (persistent GTD).

The way hCG levels are monitored is through a routine blood test. The levels are monitored once a week to make sure they are declining, as this is an indication that no molar tissue remains. Once the levels go down to zero for three weeks in a row, they are then monitored monthly for anywhere from 3 months to a year. Once the levels have consistently remained at zero for that amount of time, you are given a clean bill of health and can move on with life.

Because hCG levels are also present with a normal pregnancy, you are very firmly instructed to not get pregnant until you've had the requisite number of tests with negative hCG levels so that persistent GTD cannot be missed. hCG levels would naturally increase with a normal pregnancy, and as such, persistent GTD would go undiagnosed. Since long-term survival rates with persistent GTD are completely dependent upon early diagnosis and treatment, it is imperative that nothing get in the way of strictly monitoring the presence of molar tissue.

So, not only did we have the sadness and stress of a miscarriage, but then we get to face the reality that we created a genetically mutant baby, and then we get to live with the threat of cancer and unpleasant treatments, but now you are telling me that we can't even try to conceive another child for at least a year if we can at all (which would only happen, I think, if I had to have a hysterectomy; otherwise, from what I've read, it seems that you can get pregnant again and that your chances of a future molar pregnancy are no greater than that of the general population: 1 out of every 1,000 pregnancies)? In addition to being sad and scared, you can now add angry to the list of emotions that dance across my mind each day.

Thankfully, these negative emotions are short-lived. All it takes to get me out of my funk is time spent with Casey, a smile or a dance or a giggle or a new development from Riley, Winston sitting on my lap, throwing a ball for Wrigley, surrounding myself with good friends, or making good memories with those that I love and treasure. All things I love anyway, but that I should take the time to do with new-found enjoyment and purpose every day... just in case.

Hopefully in future, brighter days, this blog will include tales and pictures of our second child living life to the fullest right along side Riley and the dogs (and me). I want that just as much for them as I do for Casey and myself, and perhaps that's what makes the present time and uncertainty that much more difficult.

This is my honest take on the current events our family is facing. I have not tried to sugarcoat it, but have tried to talk about much of it medically because it is easier to stay emotionally detached that way. If I ever do decide to make this post available to others, I hope that you will not view this as a pessimistic account of things or that we are living each second in fear and sadness. Quite to the contrary, life is good and happy and full. Sometimes a little (or a lot) of adversity makes you appreciate the blessings you do have, and I'd like to think that for the most part, that's exactly what we are doing.

In the meantime, we will hope for good numbers each week. The starting point as of last week's test was an hGC level of 161. In two hours, I will have my second test, the results of which will indicate the course of our future.

[NOTE: I wrote this post originally on February 22, 2011.  It has taken me until April 29, 2014 to work up the courage to post it.  As you will see from all of the entries between those two dates, this blog does include tales and pictures of our second child, Chase, living life to the fullest right along side Riley and the dogs and me.  That said, my pregnancy with Chase was the most stressful nine months of my life, and the six to twelve months that followed his birth were agonizing as well, as I kept waiting for something to be wrong, either with him or with me.  He is a healthy, thriving almost two-year-old with boundless energy and charm like you wouldn't believe.  I wouldn't trade him for anything and so although the sadness and anger and fear expressed in this post was very difficult, it turns out it was worth it.  Thank you, Chase, for being who you are and for all the joy and amusement you bring to all of our lives each day.]