I'm sorry I haven't updated everyone on my levels. There are many reasons for this, one being just not wanting to disappoint or let you down (I didn't even tell my family for a couple months). Now I know this is utterly ridiculous since I have no control over my levels and if you supported me before, I'm sure you will support me again. I kinda felt like everyone was a little sick of hearing about it all and the word "levels". Ugh, I know I'm sick of hearing it. I also wanted to focus on Jack's back and making sure that was doing better. It has just been a hard personal journey, so I felt like a little space to deal with it. That makes no since at all. Anyways...
My levels have been rising slowly since March. They are low and not doubling. I've also been feeling great and not having any symptoms of a problem. My oncology nurse called on the week before I was supposed to go to every other week blood draws (doh!) and said they were up. Not much, but up. I was devastated. It completely hit me out of left field because I had absolutely no trouble last time once I hit zero. I kept it to myself, except Jack, and pretended it didn't happen. But then they kept going up and I was wondering why they didn't schedule me to go back to the hospital. After about a month in a half of this, I scheduled an appointment with my doctor and this is what they know:
Basically, they will not repeat the actinomycin because they've been there and done that. Next, is figuring out if this is a persistent trophoblastic tumor/choriocarcinoma or just placental tissue that will resolve itself. The first option is about a 20% chance of occurring, the last is 80%. This is reassuring, but we have been pretty lucky in hitting the odds (I've hit several 0.01% chances). The way they are figuring all this out is through a lab in New Mexico, the only one in the US, with a specialist there. I sent off urine and blood for him a couple weeks ago. We were hoping to hear about it that week because he was going to be gone for 2 weeks. We did not hear before he left, so we are waiting to hear now in about a week. This was fine with me because Jack's surgery was the next week and I just wanted to focus on him. I could live in ignorant bliss a little bit longer.
You may be wondering what the next step will be after this. If it does come back as just placental tissue, the 80% chance, they will continue to monitor me for the next 18 months at the least. My doctor thinks it will resolve itself. There comes the next question of waiting for trying for another baby again and it will have to be at least 18 months. We were supposed to get the clear in July. When I heard this, I teared up a little, but God gave me strength that day to hear it and be comforted. No, it's not what I thought my timeline would look like to end all this, but I know he is in control. I rest in that and that alone. Not my emotions or my shallow idea of a family, but his all-knowing plan for our lives. It's still hard, but I have been mourning this for a while since all this occurred. I knew it would be a while, if ever at all.
The other scenario, the 20%, would be either more chemo or a hysterectomy. The other two of the three options I had before. I did the actinomycin and now they would do the 8-9 chemo treatment. If that doesn't work, then a hysterectomy. We are praying daily that this option is not the one.
Can you see why wasn't sure if I wanted to share all this?! It's so confusing and rare and scary to a lot of my friends and family. I just didn't want to worry anyone or answer a lot of questions that I didn't even know the answer to. In about a week I will know a lot more information and will promise to update you on it.
In the meantime I would love prayer for my health and my family. We've have been through a lot and are continuing to go through it. I would say I need prayer for strength to get through the day and to run to God for all of it. I've had "I asked the Lord" by Indelible Grace on repeat for about three weeks now because I identify with the writers pain and realization that God loves us perfectly. Even though his love looks like torture, it truly is not. He's inviting us in to be with him.
Can I say on a side note that when I looked up these lyrics that "I asked the Lord to kill my husband" popped up. Um, what?! I don't even want to know.
I asked the Lord that I might grow
In faith, and love, and every grace;
Might more of His salvation know,
And seek, more earnestly, His face.
Twas He who taught me thus to pray,
And He, I trust, has answered prayer!
But it has been in such a way,
As almost drove me to despair.
I hoped that in some favored hour,
At once He'd answer my request;
And by His loves constraining powr,
Subdue my sins, and give me rest.
Instead of this, He made me feel
The hidden evils of my heart;
And let the angry powrs of hell
Assault my soul in every part.
Yea more, with His own hand He seemed
Intent to aggravate my woe;
Crossed all the fair designs I schemed,
Blasted my gourds, and laid me low.
Lord, why is this, I trembling cried,
Wilt thou pursue thy worm to death?
Tis in this way, the Lord replied,
I answer prayer for grace and faith.
These inward trials I employ,
From self, and pride, to set thee free;
And break thy schemes of earthly joy,
That thou mayst find thy all in Me.
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