Waiting out the first week after initial diagnosis

Quite possibly the worst thing about cancer is the uncertainty the disease brings. The first week was the worst of it for me. I had crucial questions that couldn't yet be answered. 

First, I was told I have this horrible illness that takes people out left and right, which didn't leave me in the greatest mind state. Worse, the doctors couldn't positively confirm anything until they took a biopsy, which is when a chunk of tumor is surgically removed for testing in a lab. Without the biopsy information, doctors can only assume a diagnosis based on demographics. When my parents and I met my oncologist, Sarah Tasian M.D., these were some of the things that were left unanswered.

Dr. Tasian explained that she thought I had Hodgkin’s Lymphoma based on my age and gender. She explained that with a chemotherapy regimen I could potentially be cancer free around November. However, it wasn't yet clear what stage the cancer was in.

There are four stages of cancer and each stage describes a different level at which the cancer has spread. The stages get more serious as the numbers get higher. Stage I - cancer localized to one part of the body - is the least serious and stage IV - cancer spread throughout the body - is the most serious.

A PET/CT scan, to show how far the cancer had spread; a spinal tap, because lymphoma commonly spreads to the spinal cord; and a bone marrow biopsy, to show if the cancer had spread there, would need to be done before we would know everything about the staging of my disease. That made for quite a week ahead.

There are quite a few reasons why I am grateful for still being considered under pediatrics, one of them being the use of sedation.

The biopsy, where they cut into my neck to remove some of the tumor, would have been done while I was under anesthesia regardless if I was in an adult or at a children’s hospital. However, both the bone marrow biopsy and the spinal taps are typically done without drugs. They collected some of my bone marrow during the biopsy of my neck, so I was out cold when that happened. 

For my spinal taps I was given a drug similar to Valium. It usually put me to sleep sometime shortly after they finished drawing my spinal fluids. It is used to relax my muscles, it is easier on me and it makes it easier for the doctor when the needle finally is inserted between my spinal plates and punctures the spinal cord to collect spinal fluids. I usually felt the needle and some discomfort but fell asleep shortly after the procedure, which is fine because I had to keep my back straight for an hour after they finished to avoid spinal headaches.

It took until the end of the week, but eventually I was finished with the testing. I had fresh scars, one on my neck and one on each hip, was a bit sore, and I was totally ready for a vacation.

Fortunately, I got to spend the weekend with my friends in the Pocono Mountains. A badly needed chance to get away.