No More Needles!

I'm a bit late with this post...but it's only because I'm human so I whine when things are bad and forget to rejoice when they are good.
On the 6th I had my third zero reading in a row from the lab. That caused the doctor to release me from my weekly blood draws and clear me for moving on with my life. It is a huge weight off of my shoulders, but of course makes me worry a little too...
For the last few months I have been able to hide from the threat of a repeat molar pregnancy since I was not cleared to try to conceive again. Now the possibility of going through this again is more real. Since I am so good at worrying, I am also apprehensive about the doctor's decision to release me so soon from testing. Just a few years ago the recommendation was to continue testing for a minimum of a year after hormone levels reach zero, and more recently doctors have eased it up to six months. My doctor claims the latest research from the oncologists suggests just three zero tests is fine, even if it means only a few weeks time has passed. This news at first seems great, but then I worry that we will run into problems from getting pregnant sooner than we really should...I definitely have trust issues!
In the meantime, Kaia has decided that she now wants a baby sister since her best friend Sophie just got one (this is a reverse from the baby brother she was insistent on having when I was pregnant). Since I told her it would be a while, she has picked out one of her baby dolls as her baby sister and has named her Sun. Although she is obsessed with all of her dolls she has never named one before, so this is getting serious ( :

So Close...Yet Sooooo Far Away

The consult on the 31st of August was canceled due to the doctor being in surgery that day...hence the long delay in posts. I am slated for a visit and chat with her tomorrow so we will see where things stand.
It seems that the doctor and her staff have taken quite an interest in my case (after all, I am a .01% chance), or they just worry that I never call them to check in on myself. I keep getting personal phone calls from Dr. Hart or her nurse wanting to see how I am doing and wanting to deliver my latest numbers to me. I would rather hide away in my mostly blissful Kaia-filled life and forget the nightmare that was two months ago. However, Kaia does want that sibling so I guess I shall muster up the energy to deal with hormones and needles (my arm is starting to look like I am a recreational drug user).
My last call was at 7pm Thursday night from my favorite nurse, Cheryl. She has been my cheerleader and activist getting me switched to Dr. Hart's care and she always makes room for me in the doctor's schedule which is generally booked three months out.
Here is the news I got from Cheryl:

8/31: hCG level 2.5
9/8: hCG level 1.5
9/15: hCG level 1

I am still not considered a "zero" reading, even though a drop from 20,000 to 1 is pretty significant. We are also still waiting to hear what the oncologist has to say about my wait time until we try for another baby. More answers might come tomorrow. I am hoping for at least a .5 reading in the morning and less than 6 months wait time.

In the meantime, I had my ENT appointment for my thyroid and my nodule is still sitting at a plump 2.8cm...so still no slicing up my neck for now ( : I was worried that all of my elevated hormone levels would have caused an increase in its size, but they only caused about five months of extra sleepiness!

More Results Are In

So I was trying to give my mind a break. Since my last consult with the doctor I have been continuing with my weekly blood draws, but not going out of my way to call in to the doctor's office following each lab. My desire was to not hang on every number and just try to clear my mind from all of this hormone tracking until my next consult on the 31st.

I almost made it...until the doctor decided to call me yesterday after my lab draw since she had not heard from me in awhile. Regardless of my wants, the results are in:

July 18th (day of the D&C)- hCG level: 20,000
July 24th- hCG level: 727
July 31st- hCG level: 94
August 11th- hCG level: 16
August 18th- hCG level: 7
August 25- hCG level: 4

Dr. Hart did not like that in the last few weeks the decline has been so slow, but I will take what I can get. Since it has been over a month, and the numbers are now so low, the chances of needing any type of chemo are definitely out the window. Now just comes the agonizing waiting for the levels to get down to zero and remain there for awhile. The verdict is still out on what the oncologist feels the time frame will be for needing the hormone levels to remain at zero before trying another pregnancy.

On Monday I will have another blood draw and meet with the doctor. I am hoping for a 2 or lower ( :

In the meanwhile... I have returned to teaching 5th and 6th period. I never told the students at the end of last year that I was leaving or that I was pregnant...but schools are like small towns and word spreads anyways. Since being back at school I have heard that I am still pregnant (just looking really small for 18 weeks), I have heard that I had a baby over the summer (my body just recovers quickly), and some of them actually heard the real version of the story and know not to ask any questions.

I love spending the mornings with Kaia. We have had two playdates already this week, and one craft morning during which she took the scissors to my hair (I was focusing too much on my craft and not on her wandering mind- good thing it is curly hair, you can barely notice the rather large chunk missing from the front).

Dr. Consult/Lab Day #2

On Friday I got the great news that my hCG levels had dropped all the way down from 20,000 to 720!! This is a good sign that they will continue to go down and if that is the case, then chemo will not ever have to happen.
Besides the good news, during my consult, the doctor also told me that this was only the third molar pregnancy she has ever dealt with (and she is in her 50s). This really put into perspective how rare this situation is. She explained that she thinks the recommendations on molar pregnancies have changed and aren't as stringent as they used to be. She will need to discuss things with the oncologist, but she believes that once I get my hormone levels down to zero, then I might just need to keep them there for three consecutive tests before we can try to get pregnant again ( : In the end though, it will be the oncologist's decision since he is the one that deals with the risks of cancer and such.
On Friday I also had my second lab draw and will continue to have these weekly. I do not go back into the doctor for a visit until the 31st. So, as long as I hear nothing from her, it means that my hormone levels from the labs are continuing to drop.
Thanks to everyone for their support and thoughts!
Kaia is still asking every few days for a baby brother...and you know how spoiled she is, so I want to make sure she gets what she wants soon ( :

Lab Day #1

I enjoyed the best type of emotional therapy today (well technically yesterday, since it is past midnight).

I went in for my first set of lab work today. It felt strange to go up to the OBGYN office and get handed a stack of six blood work orders and told it will make my life easier to just get a bunch of them now so that for the next month and a half each Friday I can just go straight to the lab (I guess "easier" is a relative term). Now comes the waiting, I am guessing that next Friday when I meet with the doctor I will hear my hCG levels from this week and I will be hoping that the blood they took from my arm today has a level anywhere below 20,000.

So about that therapy....
After Justin was done with class today we drove straight down to the San Diego Zoo. The temperature in itself was heaven. Watching Kaia's amazement as she gazes at the animals never gets old...and she now is in love with the panda bears and how they are always chewing on their bamboo sticks. I think one of the meerkats was dying...but Justin swears it was just taking a rest (on its back, in the middle of the cage, gasping for breath). Otters have more personality than I ever knew, they would not stop swimming back and forth in front of Kaia trying to get her attention...I think they just had never quite seen hair like that before.
Then came dinner in Old Town with the greatest friends ever. Friends and food make all of your troubles disappear (especially when the food includes lobster). I have decided that spending every weekend in San Diego is the answer for dealing with the stresses of life.

The Beginning

I have Kaia, which makes all of this seem so much more survivable. That said...the experience of a molar pregnancy is still awful, and mine is just beginning.

I discovered I was pregnant with my second child at the end of May. I resigned as a high school biology teacher because despite loving my job, I would rather spend my days with my soon-to-be two children than pay someone else half of my salary to watch them so that I could then raise 180 other children.

My first prenatal visit was schedule on July 7th. This would put me at almost 12 weeks pregnant, a little later than I would have liked to be seen. The appointment later got pushed back to the 9th, and I headed in alone...Justin was in Dental school until 5pm that afternoon. When the doctor fired up the ultrasound a blank uterus appeared on the screen. She said that she could not make out the fetus and just saw some movement near the bottom of the uterus. Having seen an ultrasound of an 8 week-old fetus, I knew I should at least be seeing a pulsating heart. However, the doctor did not seem too concerned. She handed me the paperwork to make the appointment for the official ultrasound at the hospital across the street and sent me on my way with a handshake and a "good luck."

I called the doctor the next day to report that my ultrasound could not be scheduled any sooner than two weeks away. I felt this was too long to wait if in fact there was something wrong with my baby. The doctor's nurse insisted things were fine and the fetus just needed time to grow, I was told that I was not as far along as I thought I was.

The bad cramping started a few days later and got worse over the following week. By Saturday the 18th of July, I knew that I could no longer wait until my ultrasound appointment on the 24th. I went into the ER at 11:30 that morning (13 1/2 weeks pregnant). At 9pm that night I learned that my pregnancy was not viable....it was possibly a molar pregnancy and I would need an immediate D&C. "A molar pregnancy????"

For the D&C I was rolled up to Labor & Delivery...not exactly where a mother who just learned of her miscarriage would like to be. After a few hours of listening to other women scream from labor pains, I was taken into an OR an put under anesthesia for about an hour. The D&C consisted of using a vacuum-like device to suction out the inside of the uterus. Due to the possibility of the molar pregnancy, they had to scrape the walls extra closely without puncturing the uterus. Once I awoke and finished vomiting from the anesthetic, Justin and I were allowed to return home at 5am Sunday morning.

I received the call yesterday around 1pm from my operating doctor (who will now be my new OBGYN!! she is amazing) that the pathology reports did in fact show that I had a molar pregnancy. It was a partial mole....not to be confused with the even lesser known complete mole.
In the past 24-hours, my new quest has been to educate myself and others about this molar pregnancy thing...and then set out to kick its butt and continue my mission to bring a new addition to our family into this world.

Here is what I know so far.....
A molar pregnancy is when masses of abnormal tissues grow (the mole) due to a genetic error after fertilization of the egg. In a complete molar pregnancy there is no fetal development, only the placenta starts to form along with the abnormal tissue growth--even more strange is that these tissue grow in grape-like formations. In a partial molar pregnancy, a fetus begins developing, only with severe defects and it is quickly overcome by the growing abnormal tissues. This IS a type of miscarriage....but I wish it ended there.

What occurs with molar pregnancies is that an extra high level of the pregnancy hormone hCG is released from the abnormal tissue growth. After the molar pregnancy is discovered and removed (usually by D&C) the hCG levels will steadily decrease down to zero if in fact all of the abnormal tissues have been removed. If the hCG levels do not drop or continue to increase, it is an indication that the molar pregnancy has turned into trophoblastic disease. Trophoblastic disease is a continued growth of the abnormal uterine tissues and it is usually treated with mild chemotherapy to prevent the spread of the abnormal tissue which would then be classified as a cancer.

My future....
Starting tomorrow I will go in for weekly blood draws every Friday that will track my hCG levels. As of Saturday my hCG level was at 20,000. The first positive sign will be a drop in hormone levels. I will continue weekly labs until my levels have been at zero for two consecutive weeks. I will then be monitored monthly (likely for 6-12months). If my hCG levels stay at zero for an extended period of time, I will be given the go-ahead to concieve again.
If my hCG levels rise or do not start dropping I will likely be given mild chemotherapy treatments to attack any remaining abnormal tissues. There is about a 20% chance that hCG levels do not decline, but the chemo is very effective with a 100% cure rate. If hCG levels rise, they will also do a CT scan to make sure the trophblastic disease has not metastasized to other parts of my body.

Here is my outlook...
I am disappointed. I am disappointed about the loss of a child. I am disappointed that in January Kaia will not have a sibling to poke and prod and try to boss around. I am disappointed that I will have to wait to be told by a doctor when I can attempt to have another child. I am disappointed that I will never be able to go through another day of a future pregnancy without worrying that something might happen again. I am disappointed that I don't know what to say when Kaia puts her head on my stomach and tells me that she can hear the baby inside. Oh, and I am annoyed that I will be spending too many hours of my life in the doctor's office over the next few months (at least it is air conditioned).

I am thankful. I am thankful that molar pregnancies and trophoblastic disease are nowhere near as scary as melanoma and I will take this battle anyday over the reoccurance of my skin cancer. I am thankful for my Kaia, and my family, and my supportive friends. I am thankful for my health insurance. I am thankful for the ability my body has to conceive a child in the first place.

I am hopeful. I am hopeful that people will read this and understand that molar pregnacies do not just end when the woman miscarries, there is a battle with hormones that she then must wage, there are weekly blood draws that remind her of her loss, and there are agonizing waiting periods to hear of how much or how little hormone levels have changed.

I will continue to update my blog as I progress down my molar pregnancy road. I will post my hormone levels and their consequences, and I will not stop posting until my next child arrives into this world.