January 2019

Well it's been quite awhile since we caught up, my friends! If you follow my Instagram you'd see a couple updates here and there but I have the habit of keeping quiet about most of the things going on with my health. Not sure if anyone can relate, but regardless if things are going good or bad, it can be hard to share sometimes. As humans our health; emotional, spiritual, and physical is quite possibly the closest thing to us. At least this is the case for me! It is what we are left with when we strip away every other part of our lives. When someone asks how you are and you're able to respond with, "I'm good, how are you?" without thinking to yourself the ten billion things that aren't "good," right now, maybe it doesn't seem so personal. But, overtime, that question, "How are you?" has changed its weight and meaning when people ask. I don't want to always say l'm good and be dishonest, but also, regardless of all the chaos, I AM good! Or at least I am striving to be. So this can cause me to keep quiet and process everything before I share it. It helps me better understand how I feel about everything and how to handle these emotions. Time gives me perspective on my situation and many times, gives me a better outlook on what I'm going through. Because to be honest, there are days when the burden of it all is heavier than others and it breaks my own heart to think about it, let alone try and convey that to someone else.

This is not to say that I don't appreciate every text, call, letter, email, etc. that I get! These literally carry me through some days. This is just why it might seem like I'm MIA at times. I hate that I do this because I have such an appreciation for all the people that reach out; but sometimes it takes me some time. So I really thank everyone for your compassion and empathy about this! And don't stop reaching out. I'm serious. There are days when I truly need you. I see you, and the fact that you take the time to reach out and check up on me means the world. I am so grateful to God for the people that are there regardless if I can share it all or not at times. I'm reading a book right now where it says, "Our disappointments in our lives - in ourselves- aren't just isolated pieces of evidence that we fall short and life is hard. No, they are the exact places were we can break secrecy with fellow humans and show up to say, "Me too. I get it. I understand. You aren't alone, Together we can find our way home." I read this an immediately felt convicted because I clearly fall short in this area and always have! But God is definitely helping me through it.

With that being said, January has been quite a month of change!

After my brain surgery, I continued to see the inflammation and head aches from the tumors. Although I was hoping for better relief sooner, it thankfully has come! The inflammation is still there, but I no longer have these serious headaches constantly. Which is such a blessing. I also finished my full 4 rounds of immunotherapy. The first 4 rounds are the strongest doses of 2 drugs called Nivolumab and Ipilimumab. Yes, I know it's a mouthful. The full treatment plan was to continue with a lighter dose for the next two years, but most recently, those plans have changed because of some of the side effects that these infusions have caused me.

Starting in January, I began experiencing these odd spells of chills, fever, nausea, bone pain etc. These were absolutely miserable and would last for hours. But, as soon as they were over it was like nothing had been wrong. That was my first clue that something wasn't quite right in my body. Later, I had a PET scan done and blood work that showed that my liver was extremely inflamed. To give some perspective, a person with a normal, well functioning liver will have a liver enzyme level of about 50. Mine came back well over 1000... When they realized this, I was admitted into the hospital for a relaxing weekend in a bed being pumped with steroids to bring down the inflammation in my liver and bones. During that stay, I was diagnosed with autoimmune hepatitis. Autoimmune hepatitis occurs when the body's immune system, which ordinarily attacks viruses, bacteria and other pathogens, instead targets the liver. This attack on my liver can lead to chronic inflammation and serious damage to liver cells. The reason why my body turned against itself like this is because of the immunotherapy. I am apart of a small 4% of people that have this reaction to these drugs. Cancer treatment can be so frustrating! The very thing that is supposed to heal you is also killing you... From the very start I have been so hesitant to rely on immunotherapy for this reason. If I could avoid all this damage to my body as much as possible I wanted that. Unfortunately, I had to continue with it because of the aggressiveness of the tumors in my brain. But, I always said, regardless, If I was going to be putting these harmful drugs in my body, I wanted to be as healthy as possible while doing so. So, I've continued my holistic treatments as often as I can. But, regardless... the damage has been done and now I just need God to fix it. Right now, doctors are telling me I will need to be on steroids for life or very long term. I just can't accept that right now. I can't tell you how much I hate being on these drugs. I hate being dependent on a medication that although is helping in one area, causes a million problems of its own. Are you seeing a trend yet? Yes, I hate the modern medical system and medicine sometimes... You fix one thing and causes a million other issues. It is a never ending cycle of health complications caused by medication.

Being on a high dose of prednisone is miserable! It makes me irritable and hungry all the time. It gives me this insane energy to clean and organize every cabinet and corner in our house at 3 am but it takes away my strength to do it all! Not to mention the long term effects that this dependency has created on my cortisol, thyroid, and liver.

I'm just at this point where I need God to fix this. I refuse to live like this long term and damage my health like this. So please pray for this for me!!

But, past all these things that look like negatives, there is actually some really great news! After 4 months I had a PET scan done of my whole body and an MRI of my brain and no new tumors were found! Also, many of the original tumors have continued to shrink. This by no means implies that I'm out of the woods yet, but this news could not come any sooner. Because of this, I am able to stop immunotherapy for the time being while my liver begins to heal, buying me time to get better. God's timing is so good! If things continued to get worse, I would of had to either continue treatment and further damage my liver, or they would have still taken me off treatment but have no other treatment options left for me. But I feel as if God is really sparing me from this, at least for now, and I am so thankful! It is such an answered prayer. Ever since I heard that I might have to spend 2 years on immunotherapy, it has been such a weight on the back of my head. Thoughts would come creeping in, questioning if that was really "healing," because I would have to continue spending the next two years so sick from this. But at least for now, that doesn't have to be the outlook for my future. This answered prayer also gives me so much hope for my liver! I am completely resting on God to heal this for me so I don't have to be on these damaging drugs and I can gain back some of the health I've lost from it all. I am genuinely excited to see God move. He is the only hope for healing in this area. But, I pray with the belief that God can heal instead of just the problems that need to be filled. Because his will is far greater than mine and his timing is perfect. He has proved that to me time and time again and I have to remember and recall every victory in order to find strength during this valley.

Thank you everyone for all the Prayer!!