What to Research, Where to Research

How do you decide where to get your information?

One day sitting in the chair in Mathew’s room, staying in the background, while he had a visitor, I made the mistake of searching the internet for information. 

Even though we had already been told that the tumor markers had come back negative for any particular organ, for some reason I was fixated on his gallbladder. So much emphasis was put on bringing Mathew’s bilirubin down so his liver would be able to withstand chemotherapy. That was being hindered by the backup of bile, due to the cancer being wrapped around the bile duct and invading his liver. 

 I may have been looking up about bile, I really don’t recall now how my mind was filtering information at that point in time. I know all of us were still in shock and it affected our perceptions.

Anyway, I Googled about the gallbladder and bile back-up and came up with cancer of the gallbladder.

 All I did was frighten myself. It wasn’t pertinent to Mathew, and I didn’t share what I read with anyone. For a day or so I stewed in my own fear.

It did serve a purpose in the long run and this is the point of this post. After Mathew received his diagnosis of Desmoplastic Small Round Cell Sarcoma I told people that they were free to Google it all they wanted but they were not to share with us, especially Mathew, anything they found or thought they understood about what they read.

If we wanted second opinions we would seek medical professionals for that and we trusted the doctors at Moffitt to be honest with us, and they were. Again, this blog is to share Mathew’s journey through cancer and to help with the human part of navigating this journey.

A month later, after Mathew was released he made the same mistake I did. I woke up at two in the morning to find him standing in the middle of the living room crying. When I asked him what was wrong, he turned, with his phone in his hand and said, “Mom, I’m going to die.” I knew what information he had found and what the numbers were for his cancer. My heart ached for my son and what he was facing. I said to him, “Someone has to survive Mathew, why not you.” I held on to that thought with the tenacity of a drowning person. 

Some people mentioned the possibility of a miracle and I used to think that every patient there deserved a miracle. That possibly a miracle was the perfect timing of all the right things being done. Our hope was that by sharing Mathew's experience and everything we did, didn't do, understood or didn't understand will help another person understand or take an action that makes the difference for themselves or someone they love.