Surgical remission. Removing the spleen allowed my counts to come up and basically for me to start to feel normal again. 32 staples left me a reminder that I wasn't the same on the inside, but hopefully we were getting closer to a treatment plan. What we had to do now was sit and wait. Wait for the pathology to come back from Pittsburgh (a hospital that specialized in histiocytes and histiocyte disorders), wait for results from Vanderbilt, wait to see if the medications were working. A lot of waiting. Life slowly started to feel more normal. I returned to work. The kids were in school. Grandma and Grandpa went back to AZ. But in the back of my mind, I was not just waiting, I was looking for the reason behind all this. I may not have been through anything this hard in my life, but I had been through tough times. And no matter how hard that tough time was, I felt that God allowed me to grow and gave me a new perspective on life. And life was good. I have 3 beautiful children, a loving family and community, a great job that I absolutely love… what was my lesson in this? Where was I going to grow?
I had a CT scan on 3/27/2017 (splenectomy had been 2/22). The results were not as perfect as I was hoping. My two biggest lung lesions were smaller, but there were two new lesions to be found. And I had a lovely blood clot in my splenic vein (won't spend too much time here- this is a surgical complication, I was treated with blood thinners). Nothing on my liver. My anti-fungal medication level was deemed a little low. My medication was adjusted and I was scheduled for a follow up scan at the end of April and we continued to wait the results from Pittsburgh. I was distraught and anxious to say the least. I was scheduled for a bronchoscopy and a repeat scan and Dr. Yoda was going to present my case to the tumor board and his fellow hem/oncs again seeing as we had very little new information and the disease process was continuing. We were about 4 months into the illness. Still no diagnosis, still no treatment, life was on hold again. At this point, the uncertainty held more despair than a diagnosis would have. How can you go this long and still not know what it was? It seems unbelievable considering what we know about the human body, but even more believable when you consider what we don't.
As I reflect back on this time, I was really looking for guidance from God. I had not been the most religious person in my young adulthood. Did I believe in God, yes, but Jesus was a different story. I before I make anyone too uncomfortable here, I do believe that you need to be on your own spiritual journey. I can tell you my testimony and I can encourage you to think, but all of your answers are yours to discover- I don't think God would have it any other way. One thing I do encourage you to do is listen. Listen very closely. God talks to you daily, you may not recognize it until you need to, but believe me, He is there. And another point, this is my whole story, so to leave this out would make the richness of the experience fall flat.
I had never really thought of myself as a person who needed saved. I have hope, I have love, I am in a good relationship, I am educated. But I had doubts about God, I questioned His actions and I don't feel like God alters the world for anyone in particular- that was why I felt I could not have a relationship with God. Regardless of this -I felt that I wasn't alone. God was with me. The times that I was most anxious, had the most fear, the most doubt were the times when I felt that something was working against me. People could call this Satan. Ok- call it what you may- but those thoughts, those actions, those doubts worked against me down to the fiber of my being. Those thoughts made me withdraw and become muted to the love that was surrounding me. They made me fret about the future and what it would be like without me. I wanted to learn to trust myself, God and the doctors and that we would be 'ok' regardless of what 'ok' was. All relationships grow and change. If they were stagnant, how could you learn from them? Could I have a relationship with God that was not a perfect question-less joining? It was something I was working on and thinking a lot about.
We got the pathology back from Pittsburg. The first glimpse at what this possibly could be.