A Rough Start to 2019

2019 has gotten off to a rough start...

Starting back in January, because of the damage treatment had done to my liver, my oncologist chose to give me a three month break from treatment in hopes that my body would continue to respond positively during this rest period. I wish I could call this time a "rest period," but in all honesty, it has been one thing after another. Every week since then it as been an unpredictable whirlwind of unexpected symptoms, hospital visits, and health issues. Throughout January I continued to struggle with my Auto- Immune Hepatitis. Then, in February I began to have vision issues that lead to my second brain surgery. Walking into March was a bumpy road of ups and downs as I struggled with Adrenal fatigue and insufficiency. But, I also got a bit of a break when I got the opportunity to go to Costa Rica. It was a much needed break from this cold Colorado reality. I got to see a part of the world I never thought of seeing and got to spend my time relaxing on the beach and exploring the jungle.

Then, April began with the news that unfortunately, my body hasn't responded to treatment the way I would of hoped. Actually, the way I needed it to. I am continuing to see metastasis to my brain and the legions in my liver have quickly grown to a very dangerous point. And honestly, I feel disappointed in my body. I feel disappointed in my brain from the beginning. I have never been able to gain much stability with the tumor growth there. But, I am especially disappointed in my liver. I was stable! I reached a point where my oncologist felt so positive about the tumor regression in that area I was able to come off treatment. But, now, all progress that I have made has been lost.

It's like the time I put all I had into my ten page college comp paper then somehow it got erased. All that time spent researching and improving my writing; all that effort spent working, night and day, went down the drain. And that is how I feel about my liver. I use the word disappointed because honestly, I am really not angry. It is out of my control. It just makes me sad to think of where I am at now. No better than I was before all the surgeries, procedures, scans, treatments, etc. Just like the effort I put into that college comp paper, it seems that it was all for nothing. And yes, I know... it's not for "nothing" but in terms of my health it is frustrating. Now, I'm looking at a long road of even more treatment to come and it seems like if I didn't have to struggle so much this past year, maybe I could handle what is to come much easier.

Speaking of... with all this change, and continual tumor growth, it has been decided that my current treatment plan of immunotherapy is not going to work. So, I've been placed on a combination of chemo pills that will help contain the tumor growth for the time being. I will also resume immunotherapy to help control growth for now as well. But, these are both very temporary solutions to an ongoing problem. Currently, in Denver, they have no treatment options left for me. That is a hard pill to swallow. Back in November, I saw a glimpse of what might happen if the immunotherapy didn't work and this is where I would be left... but, I never actually thought this would happen. Maybe other people in my life considered what might happen to me if the treatment didn't work, but when you are going through it, it is honestly a very rare and far off thought in your head.

So, It has been suggested to me to travel to MD Anderson Hospital in Houston in order to try and get on a trial called TIL (Tumor Infiltrating Lymphocytes). This really is one of my only options as I am disqualified from most other trials because of my other health issues (caused by the stupid treatment that didn't work...). The TIL trial is a sort of immunotherapy treatment that involves taking white blood cells from the patients' tumors, growing them in the laboratory in large numbers, and then giving the cells back to the patient. If I undergo this treatment, it's not going to be an easy one. If I qualify, I am pretty much signing on to a year full of tumor removing surgeries, full blown chemotherapy, infusions of these cells, and a month spent living in a hospital. Not to mention being away from home for it all.

Next week I will travel to Houston for the initial consultation. In the mean time my weeks have been filled with procedures and hospital visits. After I got back from Costa Rica, I began to get very sick. Pretty much three weeks of fevers, nausea, and flu-like symptoms that kept me either at home or in the hospital. Then, I found out I had 2 new brain tumors that needed to receive Gamma Knife radiation. The neurologists were also concerned that the two tumors they've removed were growing back. So, I received radiation for the 2 new ones last week. Then, this week, I had a liver biopsy in order to confirm what the doctors already know. That I have extreme tumor growth in my liver. But, I hang on to the good news that God blessed me with! That their are only 2 new tumors and after deliberation, the 2 they have operated on are not coming back! I count that as a win and an answered prayer in my book.

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It's crazy how one scan can change so much. One day, my biggest fear was getting better and how to overcome this road to recovery, and then the next day I'm told I have no other treatment options left. I never go into scans predicting bad news or worrying about the results. So, when I heard this, I was caught pretty off guard. I was confused, disappointed, and overwhelmed by all the bad news I was hearing all at once. And to be honest, I am still all of those things. But, if you keep up with my blog, when I tell my story, I mention that when I was diagnosed I felt as if God's plan for me had shifted. It wasn't what I thought it would be and I did not hold the tiniest bit of control. That is also how I feel now. Plans have shifted from what I thought things would look like and I don't hold the tiniest bit of control. And that is okay! I couldn't tell you what God's plan even looks like at the moment. I am just continually praying for God's direction when it comes to treatment and the attitude I should have going forward. For him to open doors and close doors where he see's fit. To take care of my mind, body, and spirit and continually seek God in each of those aspects of my life. I get by through living and being grateful in the small joys of life and seeking gratefulness everyday. Being mindful of the small blessings I have even though there is chaos going on around me. I find so much peace in that! I would be lying if I said I had any clue of what to do after hearing these changes. But, the one thing that hasn't changed is the love God has for me and the plan that he has for my life. I constantly remind myself, there is no losing. Because no matter what, God always wins.

If there are two things I could ask of you one would be prayer. I need God's direction on what to do now more than ever. The second would be support. I know it has almost been a year since I was diagnosed. And I know it can be easy to forget. But, in all honesty, going forward, I believe that this is going to be the hardest time for my family and I. And we need all of our family and friends. You have no idea how much we appreciate the support and prayer we get. I just... need it going forward more than ever. Thank you all so much.