When I found out that I had cancer, it was already Stage IV with a grim prognosis. I knew this by googling, but my primary oncologist did not mention time line, and I was honestly afraid to ask. At this point so much was unknown- biopsies were inconclusive, my liver was riddled, and the primary site was not found. I have learned that most people when diagnosed with cancer know right away many more specifics and even know what their treatment plan looks like. This is not my world. My first chemo had a 10-50% chance of working and it did, but then and now, I still don’t have a treatment plan. It is a knock it down and wait for it to grow and knock it down again kind of approach. The fact that I have knocked it down twice is miraculous.

So after just one round of chemo, my husband and I scheduled a visit to MD Anderson, the number one cancer hospital in the United States, thinking that if Moffitt can’t figure this out, MD Anderson can. Our visit to MD Anderson was the hardest experience I have ever had. We didn’t find any answers at MD Anderson, but we learned the grim reality. We were told statistically that people with the degree of cancer I had at that point lived about a year and also that I should expect treatment for life. This was the first time in my life that I could not stop crying. I don’t remember how long I cried but I remember not stopping. I remember the tears flowing through the lab draw, waiting for the shuttle, on the ride back to the hotel and more. I have never been so scared. This visit was very destructive to our hope, our lives, and just everything. I will write more on this later.

My reaction was calling my doctor’s nurse at Moffitt, telling her what I was told and scheduling more chemo as soon as possible. I now knew I had no choice but to fight but the fear took over. I was very broken.

When we got home and I told my friends and coworkers what I was told, many said make sure you start writing this all down, write the kids letters, etc. I tried. I started writing in all my free time and I cried and cried and cried. All I could think about was 1 year. I couldn’t get it out of my head. I kept pestering my husband with my fears and what should I do to get him and the kids ready.

It all hit a head one day when my husband was chauffeuring me home from work. I think I told him I needed to get to get the house in order, write more letters, figure out where my then one year old would go to preschool… and he just told me that I cannot worry about when and if I wont be here because if I do, I am not living. I cried yet again but it sunk in. I couldn’t focus on the end, because it was limiting my ability to be present and live. My family and kids need me know while I am here.

So, I haven’t written letters, but I will when it is time. I have stashed important emails, cards, pictures, etc. in plastic tote boxes which I will sort when it is time for the kids. But… for me it isn’t time yet.

Am I Just Going Through The Motions?