We can't believe it has been just over 4 months since our last blog post. Time is seriously flying by and its a little crazy! But also good. We have been so happy and truly blessed that these last 7 months have flown by like they have. So this is going to be the end of our crazy chapter. We never thought that this last blog post of this crazy time of our lives would ever happen, but we are so happy that it actually is happening. Maybe I will find something else to blog about now instead of weird pregnancy cancer problems... haha
So our last blog post talked about how I had to switch treatments. These treatments happened every other week so I had two treatments a month. The first few treatments really didn't bother me. It was the usual feeling tired and feeling just a little "off" but then about the 3rd or 4th treatment I felt the nausea. I felt like I just wanted to lay in bed and not do anything. With some treatments I wanted to eat every second and with others I wanted to vomit just when thinking about food. I never really knew how my body was going to react with every treatment because something would be different every time so that was actually really annoying. It also got to the point where certain smells, like alcohol prep pads, or even the thought of me getting treatments made me sick. Feeling my port or looking at it was something else that made me just feel kinda disgusted. It was just a weird thing.
My HCG levels, which are my tumor marker, decided to be really stubborn at the end. The goal was for it to hit negative which is considered 3 or lower. At the end my levels went from 5 to 4 to 4 again and then finally fell to a 1 and now just recently went to zero. So the amount of treatments that I received was more than we were expecting and that was so obnoxious. I will tell you, God has tested our faith, and patience like crazy with this whole experience. Sometimes to the point where its was like "ok, can we have a break please, why can't it all just be done?" and actually it got to be so annoying at times that it became a little humorous how things just were not going the way they needed to. But we are and were quickly reminded that God has a plan and his plan is perfect.
My last treatment was such a weird feeling. Like I still can't believe I am done. It was the best feeling walking out of the doctors office knowing I was never going back literally. Mike and I moved the day after to Kansas City, Missouri. I got my port out right after I was done with my treatment. We finished everything in just the nick of time. It was kind of a crazy whirlwind but it was good to get it all done. I am so happy my port is gone. I hated that thing. Really it was just annoying and would bug me, but it did save my veins thats for sure. Anyways, It was a good day to be done with everything and to be moving on with our lives. They made me ring the cancer bell. I didn't want to but they wanted me too so I did and it was awkward haha.
We moved to Missouri because Mike is attending medical school. So I will be doing my followup visits here with a new doctor. The follow up visits just consist of me getting my blood drawn every month for however long, we will see what he says, and then from there Im pretty much done with this whole thing. So yeah thats about all it is. Nothing too exciting really. Just hoping that my levels stay down in the negative range and for some rare reason they won't spike back up.
When we found out that we had to terminate our pregnancy, we went back and forth wondering if we should name our little boy. We kinda felt weird about it and decided we weren't going to (we were in a really weird place emotionally, mentally and physically). A few months after, the subject would somehow be brought up between Mike and I on a few occasions and we both just had a really strong feeling that our baby wanted to be named. We went through our list of names we were thinking about for him and we decided his name was Jackson. Ever since we have given him a name, we have felt almost a big relief. It was a weird but awesome feeling. We are so happy we named him. It feels good and it feels right.
There is not a day that goes by (literally) where I do not think about Jackson. I wonder what he is doing all the time. I still feel him near when I'm thinking about him, or having a day where I need a reminder that he is ok and everything happens for a reason. We love him so much it has been an incredible experience to feel how much love a parent has for their child. The saying, "Families can be together forever" has a whole new meaning to me now. I have always believed that but now it just has so much more meaning. I am so grateful I know that it is possible for this to happen. That when we die we will still be with our families. How could something so great, like your family, have an end? We find a lot of comfort knowing that our little Jackson is with his relatives that have passed on and we know that he is loved and being taken care of for sure. I know he is happy. I know whatever he is doing over there is way more important than being here physically with us. We can't wait for the day we will be reunited with him. That will be a very happy day.
We just want to say thank you to everyone. All the kind words, the amount of thoughts and prayers have been amazing. We are so appreciative of it. We know that your prayers and our prayers were heard and were answered. Thank you so much. The amount of love and kindness has been amazing.We couldn't have done it without you all.
We know that things do happen for a reason. We know that we probably won't understand why this had to happen to us in this life or at this time. We trust God and the plan he has for us. He has never failed us, he always knows best. We have learned and have grown immensely with this whole experience and will be forever grateful for that. Thank you again to everyone who has been there and supported us through this really hard time in our life we love you all! Also thanks for reading our really long blog posts! :)
Now off to our new exciting chapter in life in Kansas City, Missouri..wish us luck! ;)
Mike & Amy
Sunday, July 24, 2016
Friday, March 11, 2016
Yep, It's Another Update!
Mike said we should update the blog and my response was, "I don't want to update it until I have good news". But here I am updating all of you. I am a little late on this update because I didn't know if I was going to do it or not, but I decided I better do it. Things have been going on that some might want to know, I don't know, I do this mostly for our families and friends that are far away and that we don't see often enough to keep them updated.
So as you know, from our last blog post, I started the chemo medication called Methotrexate. This was just a weekly IM injection and after a few of those it really didn't bother me anymore. I use to be terrified of needles, and this experience has literally cured me from that fear. Anyways the Methotrexate really just made me tired and thats really the only side effect. Other then there were somedays I did feel just a little out of it. Every week they would draw my blood and look where my HCG levels were. The HCG levels are my tumor marker and the goal is to have them reach zero. I was told there would be 8 rounds of the methotrexate at the least until my levels hit zero. Well as lucky as I have been through all of this my levels decided to plateau at about 2500 and I was on round 7 when this happened. Pretty much my body became resistant to the methotrexate and it just wasn't working as well as it needed to be. They like to see at least a 10% drop in my levels every week and mine were not doing that. We knew that this could be a possibility where I would have to change up the chemo. At this point, yes it was frustrating but at the same time I feel like "I don't care what I have to do, I just want to be done", type of feeling.
My oncologist referred me to another oncologist because he is only in Utah Valley once a week and he wanted someone who could be there more often if I needed anything. We LOVED Dr Soisson so this was sad. But we were referred to Dr Rich. And guess what? We Love him too!! (Side note: we have been beyond blessed with every single doctor we have met, we have loved them all and they have all been so nice and have really cared about my care. Its been amazing!) The first time we met with Dr Rich he literally talked to us for like an hour and a half. Just making sure we felt comfortable and answered all our questions, told us many stories, he's just a great guy. We feel very comfortable with him and know he really wants the best for us.
So I have started a new chemo medication, it is called Actinomycin or Dactinomycin or for short we just call it ACT-D. This medication is obviously stronger than the Methotrexate. It has to be administered through IV but if the medication leaks out of the IV at all it can be very damaging to whatever it touches. They call it chemo burn. So Dr Rich said the best thing to do is either get a PICC line or a Port. He recommended either of them, but was more for the Port. Mike and I had already researched all of this so we knew It would be best to do either the port or PICC line as well. We decided that the Port would be best. The port is placed right under my skin and there is a catheter that goes directly to my superior vena cava (largest vein dumping right into the heart). They can administer the medication through it safely and they can also draw blood from it. So Its actually really nice because it literally is saving my veins from all the poking they have been through. So Anyways I got the port placed and had my first round of chemo with it and it was really pretty awesome I think everyone needs a port! :)
Dr Rich also wanted me to get a CT scan and MRI to make sure again that nothing has spread outside of my uterus. He wanted to know exactly what we were dealing with which was actually a big relief because we were both wondering if things were still ok. All the scans came back normal and nothing has spread which is great news. I also had blood work done to make sure my liver was ok and that my blood counts were all good, and everything was good!
With this new medication I am more likely to have more side effects. The biggest one is that I could be more sick with this. I had my first round already as I have mentioned and I have been good so far. Thanks to all the anti nausea meds they have given me. My hair will continue to thin but I shouldn't lose all of it and I have continued to be tired and just kind of out of it sometimes. I receive the medication every other week, and then on the off weeks I meet with either Dr Rich or his NP to make sure everything is going ok and to have my blood work drawn again checking the same things as mentioned previously. They are keeping a good eye on me and really want to make this experience as comfortable as it possibly can be.
Mike and I are doing good!! We try really hard to stay positive and to keep busy. We have many things planned and many changes coming our way that make it a little easier to get our minds off of the situation we are in. Even though there are many times we look at our life at think "What in the World?" It really is the most bizarre situation ever and never in our life would we have thought that all this would happen from just trying to have a baby. There are many times where we just sit and laugh at everything that is happening because laughing is better then crying. We know that things could be much worse and that people are going through really hard times in there lives right now and ours isn't nearly as hard as theres might be. This has all been a really humbling experience. Siting in the room getting my treatment with so many others that are literally fighting for their lives was an eye opener. I am grateful that what I have is pretty much 100% curable and that I know that things will all be ok in the end and I know I will be able to move on and live my life. We know that one day we will be able to look back at this experience and be able to say that it was all worth it. But until then we take one day at a time, one dr visit at a time and keep on keeping on!
I have been thinking about all that we have been through and all of the things we have actually gained from this experience. First and most importantly we gained our little baby who will be our little guardian angel and who will forever be apart of our family. I have gained a stronger connection and relationship with Mike. Not that our relationship before was bad, but it has grown so much! I will forever be grateful for that. We have both gained a stronger relationship with our Heavenly Father an our Savior. These are just a few examples of what we have gained from this experience. Whenever I start feeling down and feeling like "why me", I always try to think of the positive and what I have learned and gained from this experience. We can always learn something from every situation in our lives, even the situations and trials that seem so terrible at times, we are always learning and always progressing thats what is so awesome about this life!
We love all of you and are so grateful for all the kind words and support we have received. We will forever be grateful for the generosity and kindness of those around us!
Mike & Amy
So as you know, from our last blog post, I started the chemo medication called Methotrexate. This was just a weekly IM injection and after a few of those it really didn't bother me anymore. I use to be terrified of needles, and this experience has literally cured me from that fear. Anyways the Methotrexate really just made me tired and thats really the only side effect. Other then there were somedays I did feel just a little out of it. Every week they would draw my blood and look where my HCG levels were. The HCG levels are my tumor marker and the goal is to have them reach zero. I was told there would be 8 rounds of the methotrexate at the least until my levels hit zero. Well as lucky as I have been through all of this my levels decided to plateau at about 2500 and I was on round 7 when this happened. Pretty much my body became resistant to the methotrexate and it just wasn't working as well as it needed to be. They like to see at least a 10% drop in my levels every week and mine were not doing that. We knew that this could be a possibility where I would have to change up the chemo. At this point, yes it was frustrating but at the same time I feel like "I don't care what I have to do, I just want to be done", type of feeling.
My oncologist referred me to another oncologist because he is only in Utah Valley once a week and he wanted someone who could be there more often if I needed anything. We LOVED Dr Soisson so this was sad. But we were referred to Dr Rich. And guess what? We Love him too!! (Side note: we have been beyond blessed with every single doctor we have met, we have loved them all and they have all been so nice and have really cared about my care. Its been amazing!) The first time we met with Dr Rich he literally talked to us for like an hour and a half. Just making sure we felt comfortable and answered all our questions, told us many stories, he's just a great guy. We feel very comfortable with him and know he really wants the best for us.
So I have started a new chemo medication, it is called Actinomycin or Dactinomycin or for short we just call it ACT-D. This medication is obviously stronger than the Methotrexate. It has to be administered through IV but if the medication leaks out of the IV at all it can be very damaging to whatever it touches. They call it chemo burn. So Dr Rich said the best thing to do is either get a PICC line or a Port. He recommended either of them, but was more for the Port. Mike and I had already researched all of this so we knew It would be best to do either the port or PICC line as well. We decided that the Port would be best. The port is placed right under my skin and there is a catheter that goes directly to my superior vena cava (largest vein dumping right into the heart). They can administer the medication through it safely and they can also draw blood from it. So Its actually really nice because it literally is saving my veins from all the poking they have been through. So Anyways I got the port placed and had my first round of chemo with it and it was really pretty awesome I think everyone needs a port! :)
Dr Rich also wanted me to get a CT scan and MRI to make sure again that nothing has spread outside of my uterus. He wanted to know exactly what we were dealing with which was actually a big relief because we were both wondering if things were still ok. All the scans came back normal and nothing has spread which is great news. I also had blood work done to make sure my liver was ok and that my blood counts were all good, and everything was good!
With this new medication I am more likely to have more side effects. The biggest one is that I could be more sick with this. I had my first round already as I have mentioned and I have been good so far. Thanks to all the anti nausea meds they have given me. My hair will continue to thin but I shouldn't lose all of it and I have continued to be tired and just kind of out of it sometimes. I receive the medication every other week, and then on the off weeks I meet with either Dr Rich or his NP to make sure everything is going ok and to have my blood work drawn again checking the same things as mentioned previously. They are keeping a good eye on me and really want to make this experience as comfortable as it possibly can be.
Mike and I are doing good!! We try really hard to stay positive and to keep busy. We have many things planned and many changes coming our way that make it a little easier to get our minds off of the situation we are in. Even though there are many times we look at our life at think "What in the World?" It really is the most bizarre situation ever and never in our life would we have thought that all this would happen from just trying to have a baby. There are many times where we just sit and laugh at everything that is happening because laughing is better then crying. We know that things could be much worse and that people are going through really hard times in there lives right now and ours isn't nearly as hard as theres might be. This has all been a really humbling experience. Siting in the room getting my treatment with so many others that are literally fighting for their lives was an eye opener. I am grateful that what I have is pretty much 100% curable and that I know that things will all be ok in the end and I know I will be able to move on and live my life. We know that one day we will be able to look back at this experience and be able to say that it was all worth it. But until then we take one day at a time, one dr visit at a time and keep on keeping on!
I have been thinking about all that we have been through and all of the things we have actually gained from this experience. First and most importantly we gained our little baby who will be our little guardian angel and who will forever be apart of our family. I have gained a stronger connection and relationship with Mike. Not that our relationship before was bad, but it has grown so much! I will forever be grateful for that. We have both gained a stronger relationship with our Heavenly Father an our Savior. These are just a few examples of what we have gained from this experience. Whenever I start feeling down and feeling like "why me", I always try to think of the positive and what I have learned and gained from this experience. We can always learn something from every situation in our lives, even the situations and trials that seem so terrible at times, we are always learning and always progressing thats what is so awesome about this life!
We love all of you and are so grateful for all the kind words and support we have received. We will forever be grateful for the generosity and kindness of those around us!
Mike & Amy
Saturday, January 16, 2016
Update
We have had many people asking us questions and people who have been interested in what we are doing now and what the future holds for us so we have decided to give an update to those who want to know!
In our first post, when we first found out what was going on, I mentioned that there maybe would have to be some chemo that was done. The reason for this is that once you get the molar pregnancy out, there is still a possibility where there are still some cells in there that are multiplying and spreading which pretty much means you now have cancer. So after my procedure they told me that they were going to check my HCG levels weekly to make sure they were going down. If they ever plateaued or went up then we would know that there was still something in there that needed to be taken care of and this is where the chemo would take place.
In our first post, when we first found out what was going on, I mentioned that there maybe would have to be some chemo that was done. The reason for this is that once you get the molar pregnancy out, there is still a possibility where there are still some cells in there that are multiplying and spreading which pretty much means you now have cancer. So after my procedure they told me that they were going to check my HCG levels weekly to make sure they were going down. If they ever plateaued or went up then we would know that there was still something in there that needed to be taken care of and this is where the chemo would take place.
My HCG levels started going down drastically in the beginning. The day of the procedure they were around 500,000. A few days later they were 44,000 and then the weeks after that they were as follows, 11,000 10,000, 11450. So when I saw that they only dropped from 11,000 to 10,000 both Mike and I were a little worried, but they said that they at least dropped so that was ok and they wanted me to get my blood drawn the next week to see if they would drop or not. Well as you can see they actually went up that next week. I am able to see all my labs that are drawn online before the Drs office even calls me which is great, but I was looking every 15 mins that day to see if they had dropped. When I saw the results I kind of felt like, "Of course they would go up, this is how my life is right now, one bad thing after the other". It sucked knowing I was going to have to do chemo and I felt like this process was just going to be even longer and was going to be drug out.
Later that day my OB called and pretty much said my levels have gone up, that he had already talked to Dr Soisson (the GYN oncologist) I would be seeing him soon and I will also be having a CT scan tomorrow to see if the cells have spread at all. I was kind of in shock at how quickly everything was going to be moving, but at the same time I was SO grateful they were being efficient and getting things taken care of. The next day I got my CT scan and the day after I was in seeing Dr Soisson.
The visit with Dr. Soisson went so well! We really like him. He is kind of a scatter brain but its because his brain is literally going 100 mph. You can tell he is very smart. He walked in the room and said "Amy I finally get to meet you, Ive heard all about you for so long". This is true! When we found out about the situation going on Dr. Soisson was contacted and I was supposed to meet with him the day of my procedure. So he was informed the whole time of my situation. When he heard my levels went up he told my OB he was not surprised because of how long the Mole was in there and how big it was he was not surprised that my HCG levels went up. He went over everything with us and told us what needed to happen. He first told us that the cells have not spread outside of my uterus which is really great news! He then told us that I would need to be started on chemo right away. The Chemo that they will be giving me is called methotrexate. This medication is very mild. I will not get sick from it or lose my hair. The only thing that could really happen is that my hair can start to thin. He said that what I have is called Gestational trophoblastic disease. This "disease" is very treatable, like pretty much 100% treatable. My chances of this happening again have gone up to a 1% chance, where before the chances of this happening was a .001% chance. So you know...the chance is low but it is still higher than it was.
I then received my first round of the chemo medication. They are administering the medication via injection. So I get to get a great big shot in my bum for the next 8 weeks. So I got one shot and have 7 more to go! And I have felt great and fine and have had no symptoms from the chemo. One thing that we were told and also why I felt like things were just going to be drug out, is if I had to do the chemo then we would have to wait a year after my levels hit 0 to start trying to get pregnant again. A year really doesn't seem that long especially when your looking at your whole life, but a year just waiting to try and have another baby felt like torture to me and it really just felt like a really long time. Dr Soisson informed us that when my levels hit 0 they will need to stay at zero for 3 months and then we can start trying to get pregnant again. This was probably the best news for us. He says that the whole waiting a year thing was old research and old news, that all we need to do was wait 3 months. Things are finally starting to look up and we are feeling really optimistic and positive about the future.
This whole experience has been rough to be honest. It has been a learning and growing experience for sure. There are days that are harder then others. Days where I miss our little guy in my belly. But there are more good days then bad. Both of us are reminded every single day that it is all going to be OK. The number of times we have felt our little guys spirit with us is uncountable. I KNOW he is with us and surrounds us everyday and I know that we will see him again. I know that we have a Heavenly Father who loves us and really wants what is best for us. It will always be OK. It will always work out! I have never been so grateful for my faith. I do not know how people get through trials without our heavenly father. The only way we are making it through and doing so well is by many, many prayers the support of our friends and family and having each other. Trials really just suck, but they have to happen. We have to grow and we have to learn. We may never understand why this had to happen to us, but we know it had to and we know it will all be OK. It doesn't make it easy but it makes it bearable. One of my favorite quotes that my mother in law shared with us by Joseph B Wirthlin is,
"The Lord compensates the faithful for every loss. That which is taken away from those who love the Lord will be added unto them in His own way. While it may not come at the time we desire, the faithful will know that every tear today will eventually be returned a hundredfold with tears of rejoicing and gratitude."
I believe this very much! I know that God is good and has a reason for everything. He never leaves our side and will always bless us more than we can ever imagine!
This is all that is going on right now! We are just healing from all that has happened and trying to stay positive. Just waiting for these levels to drop! We are grateful for all of you! We are so grateful for the many kind words and the many prayers in our behalf. Thank you so much!! We love you!
Mike & Amy
Later that day my OB called and pretty much said my levels have gone up, that he had already talked to Dr Soisson (the GYN oncologist) I would be seeing him soon and I will also be having a CT scan tomorrow to see if the cells have spread at all. I was kind of in shock at how quickly everything was going to be moving, but at the same time I was SO grateful they were being efficient and getting things taken care of. The next day I got my CT scan and the day after I was in seeing Dr Soisson.
The visit with Dr. Soisson went so well! We really like him. He is kind of a scatter brain but its because his brain is literally going 100 mph. You can tell he is very smart. He walked in the room and said "Amy I finally get to meet you, Ive heard all about you for so long". This is true! When we found out about the situation going on Dr. Soisson was contacted and I was supposed to meet with him the day of my procedure. So he was informed the whole time of my situation. When he heard my levels went up he told my OB he was not surprised because of how long the Mole was in there and how big it was he was not surprised that my HCG levels went up. He went over everything with us and told us what needed to happen. He first told us that the cells have not spread outside of my uterus which is really great news! He then told us that I would need to be started on chemo right away. The Chemo that they will be giving me is called methotrexate. This medication is very mild. I will not get sick from it or lose my hair. The only thing that could really happen is that my hair can start to thin. He said that what I have is called Gestational trophoblastic disease. This "disease" is very treatable, like pretty much 100% treatable. My chances of this happening again have gone up to a 1% chance, where before the chances of this happening was a .001% chance. So you know...the chance is low but it is still higher than it was.
I then received my first round of the chemo medication. They are administering the medication via injection. So I get to get a great big shot in my bum for the next 8 weeks. So I got one shot and have 7 more to go! And I have felt great and fine and have had no symptoms from the chemo. One thing that we were told and also why I felt like things were just going to be drug out, is if I had to do the chemo then we would have to wait a year after my levels hit 0 to start trying to get pregnant again. A year really doesn't seem that long especially when your looking at your whole life, but a year just waiting to try and have another baby felt like torture to me and it really just felt like a really long time. Dr Soisson informed us that when my levels hit 0 they will need to stay at zero for 3 months and then we can start trying to get pregnant again. This was probably the best news for us. He says that the whole waiting a year thing was old research and old news, that all we need to do was wait 3 months. Things are finally starting to look up and we are feeling really optimistic and positive about the future.
This whole experience has been rough to be honest. It has been a learning and growing experience for sure. There are days that are harder then others. Days where I miss our little guy in my belly. But there are more good days then bad. Both of us are reminded every single day that it is all going to be OK. The number of times we have felt our little guys spirit with us is uncountable. I KNOW he is with us and surrounds us everyday and I know that we will see him again. I know that we have a Heavenly Father who loves us and really wants what is best for us. It will always be OK. It will always work out! I have never been so grateful for my faith. I do not know how people get through trials without our heavenly father. The only way we are making it through and doing so well is by many, many prayers the support of our friends and family and having each other. Trials really just suck, but they have to happen. We have to grow and we have to learn. We may never understand why this had to happen to us, but we know it had to and we know it will all be OK. It doesn't make it easy but it makes it bearable. One of my favorite quotes that my mother in law shared with us by Joseph B Wirthlin is,
"The Lord compensates the faithful for every loss. That which is taken away from those who love the Lord will be added unto them in His own way. While it may not come at the time we desire, the faithful will know that every tear today will eventually be returned a hundredfold with tears of rejoicing and gratitude."
I believe this very much! I know that God is good and has a reason for everything. He never leaves our side and will always bless us more than we can ever imagine!
This is all that is going on right now! We are just healing from all that has happened and trying to stay positive. Just waiting for these levels to drop! We are grateful for all of you! We are so grateful for the many kind words and the many prayers in our behalf. Thank you so much!! We love you!
Mike & Amy
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