April 2020 - A New Chapter Begins

I recently posted a shortened version of this update on my Instagram but here the full update in regards to my health recently.

I think I finally figured out the words to say. It’s hard to write and update at times because it just makes everything so real... I apologize if this news comes to some that I’m close with through this outlet first. I wish I could reach out individually to every one of you and explain but it’s been hard for me.

After my surgery, I began experiencing numbness from the waist down and I was in excruciating pain. Although the surgery has resolved all pain and pressure in my head and I have seen some neurological improvement, my health has progressively gotten worse. I had an MRI that showed that the cancer has spread to my spinal fluid. I was diagnosed with a very rare progression in melanoma that only 1-3% of people have called leptomengenial metastases disease (LMD). I woke up last Thursday morning to see my dad and a clear tea cup sitting by my bed full of pills and I knew exactly what was happening and what this meant.

Doctors have often told me that because of the longevity of my disease there is a higher risk of this sort of metastases. I never allowed the fear of this possibility to enter my brain so when I heard, it was earth shattering. To be honest it all happened so quickly. One moment I’m experiencing pain and not sure why. The next I’m getting an MRI. Then within 12 hours, I receive the news that this disease is “terminal.”

Wow, I hate that word. Let’s not use that word going forward. That’s a statement I’m not accustomed to saying. In fact, it brings me to tears at the thought of it and is even challenging to write. I’ve never allowed an ounce of unbelief to contradict that I would beat this. When doctors have tried to suggest otherwise I have blown them off and rejected their comments. But this new diagnosis, for lack of better words, has turned Stage 4 cancer into something more serious. I’m not claiming that. I’m not accepting that this must be my fate because medically this is what has been said. But these are the facts: I am currently taking targeted therapy drugs that are helping me see improvement from pain already and most likely the steroids are helping too. The plan was to begin radiation to these areas of my spine immediately but God had other plans! My parents and I have decided to move to San Diego to be closer to family, support, better access to doctors and treatment, and to join our Clairemont church during this time.

This move and change in doctors has been so specifically guided by God. I was skeptical about it all when it was first laid on our hearts and so I asked God “If this is Your will please open the doors we need. And if not Lord, close doors.” Because of the delicacy of my circumstances I knew that if my family decided to do this we would need the perfect circumstances and help from others. That is exactly what we got! At every corner of this move God has blessed us, even down to the to the tiniest detail.

Another example of God’s provision can also be seen in my health. A few days after being diagnosed with LMD, I received the results from my full body PET scan that showed that the melanoma in my organs, bones, and lymph nodes is almost completely gone! All that remains is one small nodule in my lung. That is absolutely huge after the extensive metastases that I have had across my body. This change can be attributed to the trial that I did in Houston. I can honestly breathe such a huge sigh of relief knowing that the trial was not for nothing and did provide a form of healing. Although it has proven to not be beneficial for my brain or spinal fluid, I can be grateful for my lung, liver, lymph node and bone health.

Get this...as much as I value and respect my doctor in Colorado she expressed to me that, “You’ve seen improvement systemically but that is irrelevant because of the new metastases to your spinal fluid.” But after doing some research and speaking with other LMD patients, statistics show that if there is no cancer in the rest of your body and the cancer is just in your spinal fluid then your life expectancy improves. The dismal statistics my doctor used don’t reflect the information that we learned. That is awesome news! Why wouldn’t that statistic be shared to give me some hope or at least provide some sort of solace? Regardless I’m rejoicing in that little victory. My body will be able to focus on healing in this area and not have to fight off this cancer in the rest of my body. Additionally I am blessed to no longer be seeing that doctor and I am moving on to another doctor that I am praying has great wisdom over my life.

As of now my new doctors are formulating a plan of attack and we are believing God for their effectiveness. This will include continued targeted drug therapy, immunotherapy, radiation at some point to my spine and a possible clinical trial. We are also looking into what we can do naturopathically to improve my health. All of these are efforts to contain things for the time being but there is no known effective treatment or medical cure for Leptomengenial disease which tends to be aggressive.

Writing those words brings a sense of acknowledgement to my circumstances and a realness to it all. It brings me a sadness that is unexplainable. Someday my hope is to be able to put it in to words but the best that I can say is that it is a sorrow that takes your breathe away. I have to constantly ask God to help me focus on what is directly in front of me because speaking of this diagnosis brings me overwhelming and unhealthy thoughts of my future at times. I have struggled between the healthy acknowledgment of my circumstances as well as the full acceptance of God’s continual power of healing and His faithfulness to keep His promises. Because regardless of the lack of hope I feel in moments, I know beyond a shadow of a doubt that:

Romans 8:11 States, "The Spirit of God, who raised Jesus from the dead, lives in you. And just as God raised Christ Jesus from the dead, he will give life to your mortal bodies by this same Spirit living within you."

I know that Christ’s power defeats sin, sickness and death. So if I have that same Spirit living within me, we can see healing at any moment no matter the prognosis and regardless of how bad things get. So with full faith I enter this chapter knowing I have a God with healing power on my side and fighting for me.

Overall it’s a lot right now. So many appointments, scans, etc. in the midst of not being able to really comprehend all that’s going on at times because of the interference of medications. Also in the midst of it all I moved to a different state! I appreciate and need all the support of my friends and family right now. But please be patient with me. We’re all still processing this.

There is still so much hope to be found because Jesus is still alive and working in my life! I just need time to process, regroup and come up with a plan going forward.

Although this changes a lot, I serve a God that is unchanging.

Even here. At the very bottom. He calls me to a deeper hope. A deeper trust in Him. It’s hard. And it hurts so much. But I still choose to trust. I trust and stand on His word and His promises wholeheartedly.

This update is not what any one of us wants to hear but from the day of surgery to this very day I continue to see miracle after miracle and example after example of God’s Grace and provision as my family walks through this next chapter.