Update

Well its been awhile since our last update. So much has happened so before you read I am warning you this will be long...like always :)

To start where I left off on the last post, we did the IVF stuff to try and freeze some eggs. Well, that all just went a little crazy. My body went crazy to say the least. I got over stimulated from the hormones which caused a lot of issues. First when they went to retrieve my eggs they went in and saw that what they thought were hundreds of eggs were actually all cysts all over my ovaries. My doctor spent an hour just draining all these cyst. She got two eegs out but they ended up not being good so we couldn't use them anyway.  I remember waking up after the procedure and hearing that I had all those cysts instead of eggs and I looked at my husband and told him "this was the most pointless thing I have ever done in my life" then we of course laughed about how true that was!  We both felt really frustrated and annoyed at the situation.

Next, the next few days I did not feel good. I couldn't keep anything down and just felt like crap really. I went to my doctor and they found fluid in my stomach and in the Right lung. I ended up having to get this fluid drained from the stomach and my lung not just once but 3 times. My stomach would fill up so much with fluid I looked like I was 30 or so weeks pregnant (that is not an over exaggeration) it was crazy and it was very uncomfortable especially since I had fluid in my lung I couldn't breathe very well and getting fluid drained was not fun at all but it provided me instant relief so it was a love hate thing. I ended up having to stay in the hospital for a few days just so they could monitor me and make sure my labs and everything would return back to normal. Finally my body was able to get back to normal after about a month.

After all that crazy happened I met again with my gyn oncologist and we started talking about what the next step was for me. She let us know that she was concerned with how my HCG (tumor marker) levels were going. How they were still rising but not quickly enough for chemo. She was worried to just let my levels still go up without doing anything because in all honesty this could start spreading throughout my body at any second and then it would more difficult to treat. We started discussing doing a hysterectomy and we were thinking this would probably be the next step for me. She re drew my labs and Mike and I were supposed to go home and discuss if we were comfortable to proceed with a hysterectomy. Obviously this was a really big decision for us to make and she did not want us to make that decision right then and there. So we went home and talked about it a lot while we were waiting for my labs to come back.

My lab results came back and for whatever reason my HCG level started to drop. So this meant the hysterectomy was off the table since these levels were dropping. This was probably the best news Mike and I have received in a very long time. It actually took both Mike and I a good 3 or so months to actually believe that my levels were really going down and that something good was actually happening. In all honesty neither Mike or I were really that excited at first because it was almost just too good to be true.

Of course, right when we started to really get excited and think that this was it, this stupid thing was finally going to leave, I received my monthly lab result that my HCG level started to go back up again.  I felt very numb, very angry and just really really sad. I asked God why he would do this to me? Why would you get all my hopes up like that. I questioned if there was really a god and I questioned if there was a god does he really love me?  I think everyone goes through moments in their lives where you ask these questions. I do not think it is a bad thing to ask these questions especially if you are truly willing to find the answers. Asking questions is not a bad thing, it only helps us grow.  I can tell you that there is a god and he is very loving and cares very much for not only me, but for everyone. After a lot of praying and asking a lot of questions I knew everything was going to be OK. I felt a lot of peace and I was ready for whatever was going to happen in the near future

We again met with my gyn oncologist and she said she wanted to get some imaging, get some advice from a few other doctors and re draw my lab work before making and huge decisions.  My HCG level was going up but still not very much. My level was at 42 at this time.
Recently I went in for my repeat labs. My HCG level came back at a 29. For the second time my levels are going down. I don't know how to feel about it.  I am very thankful and I am reminded one more time that god is there and is very much aware of me.

My Levels could go up and down like this for months or years. No one knows, this thing is so random and has a mind of its own. Its crazy to look back and think we have been dealing with this for  almost two years. Two years ago I found out I was pregnant. Its just crazy to think about. It also makes me think about anniversaries and how cool it is to have a day that you can look back on.
This time of year is always a little hard for me. All the anniversaries start coming up. The beginning of october is when we first saw our little babe on that Ultrasound bouncing around in there and just looked like he loved his life. Oct 31st was when we told our families we were pregnant. A few short weeks later we found out it was a boy. The beginning of December is when we found out about the situation of my pregnancy and December 18th is when we had to say goodbye to that little sweet baby. No matter what the anniversary is, a happy one or a sad one, I think its cool that I can look back and see how far I have come as a person.  I have learned so much about myself about Mike and about my savior and heavenly father.

One last thing I want to share with you and that I think it is a very important lesson I have learned recently. I have the opportunity to volunteer  in the LDS Temple every Saturday. One week I was standing in the Dressing Room and looking at this picture of the savior walking through the street with people all around him. There is a women who is kneeling on the ground and is tugging at his clothing all she wanted was to touch him. As some may be familiar with this story, we know that Christ stopped and knew that this women touched him. In all the hustle and bustle that was going on around him he felt that touch and he stopped and took the time and went over to this women.
As I am looking at this picture a thought came into my head. "I have performed many miracles, why can't I perform a miracle in your life?".  This hit me really hard and has had a really big impact on my life. Was I doubting God and his capabilities? Sometimes, maybe I was!

We learn a very important lesson from this story of this women. Christ stopped and went back to find out who touched him. He cared. I want you to know that he cares about you and your life. He cares about everything going on in your life the good and the bad. He is never too busy to be there for you. There is nothing or no one more important in this world. He loves you, he hears you and he wants the very best for you. No matter what is going on in this world that you think is more important than your problems just know, that he will stop and listen.

SO now we just still play the waiting game. We hope and pray for things to still go the way they are going, but we are also very much aware that it is all in Gods hands and whatever happens is supposed to happen but we try to stay positive and hope for the best!
As always Mike and I are very grateful for our families and friends that have been there for us through it all. We couldn't get through it without you. Thank you! we love you!

Mike & Amy

And We're Back

Well... Here we are again. Our last blog post was titled "The End" and as you may have guessed we were wrong when we said it was "The End." Maybe we jinxed ourselves? I don't know.  First, If you are new to our blog it may be of benefit to you if you go back a read the last few posts so you are not completely lost. 

Mike and I moved out to Kansas City in July, the day after I finished my last treatment and removed my port. We were excited for this new chapter in our lives and were ready to start new and to move on. We started doing follow up with Dr Ernst who is a heme/oncologist and this consisted of just monthly lab draws to make sure my HCG level (tumor marker) was still at zero. In October I received a call from him saying that my HCG level was at 16.  My heart dropped as I thought to myself "is this really real life right now?". We decided that I would need to get a CT scan done to just make sure nothing had spread outside of my uterus. Scans all came back normal. Dr Ernst decided to get a second opinion from Dr Jewell who is a gyn oncologist and we will be forever grateful that he did this. 

Since my levels were so low and were staying low, Dr Jewell wanted to just watch my levels and see what  would happen. She said sometimes when they see low levels that aren't really doubling fast they will eventually go away by themselves. Eventually meaning months to years. So thats what we did, we watched my levels and they slowly kept going up. Once we saw the trend of them going up and not really stopping or plateauing, we knew this was probably not going to go away on its own. In between all of this I had more labs done and imaging done and in all my scans they could not see where these group of cells or tumor was that were causing my HCG to go up. They decided I should have a D&C to clean out my uterus and maybe that would help so we did that and that didn't do anything.  So, I did more imaging. Recently, I had an MRI done and they think they have found where the tumor is in my uterus.  So now what? Well, the problem is, my levels are going up but they aren't going up fast enough to where Chemotherapy will actually work. If cells aren't multiplying and dividing fast enough chemo just doesn't do the trick. If I were to do chemo right now, nothing would happen.  There might be an option to try and do surgery and take out that part that they found but it could end in having a hysterectomy if something went wrong during surgery, or my uterus just wouldn't be as strong and may affect being able to carry a baby to full term in the long run but nothing has been decided right now. Either we will just have to wait until my HCG levels decide to multiply and start going up like crazy to start chemotherapy or we will try surgery. Both have pros and cons and we have no idea what we are going to end up having to do. 

Dr Jewell Recommended that we should probably do egg retrieval and make some embryos, in the case that I do need chemotherapy, then I will still have an option to have kids in the future. With chemo you never know how it will have an affect on your fertility. Mike and I both felt really good about this and felt like it was the right thing to do. So that is what we are doing as of now getting these eggs out and making babies. :)  I have another MRI scheduled to make sure it is consistent with the other one and then we will talk about what the next step is for me and what the best option is. 

It has taken awhile to even mention this to anyone besides our family, because we're pretty much in denial that this was actually happening. That the 4% chance of this coming back was actually happening to me. But what can you do? We try to move forward with positive thoughts and we do know that everything will all be ok one of these days! We decided it was time to let all our friends and those around us know what is going on because it is a big part of our life right now and many of you have followed us on this journey and it is time to stop being in denial.  :)

Thats all that is going on, we will update when we know exactly what the next step is for me :)

Mike & Amy

P.S. For the medically savvy it was originally diagnosed as Quiescent Gestational Trophoblastic Disease but now is Minimally Invasive Gestational Trophoblastic Disease (Neoplasm)