Today was a tough day. I woke up tired and feeling kind of crappy from all of the driving the day before. We left for Miami around 7:30. I was scheduled for an IV placement at 10, a CT scan of my head and neck along a radiation simulation and mask “fitting” at 11, a swallow study at 2 and a chest CT scan at 3:30. I was feeling like a lab rat and little tense about the procedures.
The IV placement went well. These can be tough because of my “chemo” veins. The last IV I had done was inserted into the veins on the top of my hand on the second try and was VERY painful! The nurse was awesome and did a great job and got the IV into my arm the first time with minimal pain. Yeah!
Then the challenge began. We went down to the CT scan/Radiation Treatment area of the Sylvester where I was to have my head and neck CT scan, radiation simulation and mask “fitting”. I had already done this up in Jacksonville, twice as a matter of fact, and wasn’t too worried. As we walked into the waiting area I noticed all of the doctors and techs standing around computer monitors on the far wall. As I looked more closely I realized that they were set up outside of the actual treatment rooms and that they were in the process treating patients who were on the other side of the wall. I became aware of all the warning lights and radiation symbols outside the doors and felt a bit of anxiety starting to appear. When they went in to help the patient out of the room the door looked to be about 4 ft thick!
Soon it was my turn to go into the simulator and by then I was feeling a little anxious. This is some serious shit I’m going to experience! The goal of the simulation is to make a 3-D map of my head and neck so that the doctors and physicists can create a radiotherapy program that targets areas where potential cancer cells may be hiding out and spares healthy tissue. The technology and process behind this is pretty fascinating.
In order for this to work properly I will have to have my head, neck and shoulders in the same exact location for each of the 30 treatments I am scheduled to receive. The table isn’t exactly comfortable and there is a rigid neck brace that positions my head. In order to radiate my tongue while protecting the roof of my mouth from unnecessary radiation I need to keep my mouth open and hold my tongue along the floor of my mouth. To make sure my position is replicated for each treatment I have to bite on a tube and use it to hold my tongue down. With the mouth piece in place the techs stretch a moldable plastic mesh material over my head and shoulders to make a mask that they can bolt to the table to immobilize me. Medieval joy!
The process did not go well due to my sensitive gag reflex. Combined with the anxiety I was feeling, my usual sinus congestion and the post-surgery sensitivity of my mouth and tongue the situation snowballed into a disaster. I could not hold the tube in my mouth without gagging. The tech was great and understanding but I could not do it. I became concerned that this would effect my treatment. This made me more anxious and I gagged even sooner eventually breaking out into dry heaves. We tried a smaller “mouthpiece” but by then I was gagging just from opening my mouth. Dr. Samuels came down and I tried a few other options some of which worked better than others. After discussing the situation we decided it was best to take a break and try again later.
I was pretty upset and anxious even though the doctor was reassuring and Annabel was loving an supportive. My concern for how this was going to effect my treatment was making it difficult to relax so I went outside to walk around the courtyard to get some sunlight and “fresh” Miami air. This did little to help and I wound up dry heaving over a garbage can along the courtyard path.
Eventually I started to settle down a bit. We discussed the situation with several of the nurses and techs who said it was fairly common for this to happen and that eventually everyone is able to do it. Somewhere along the conversation they suggested an anti-anxiety pill to help take the edge off. This sounded like a good idea and I went for it even though I didn’t like the fact that I needed help to relax. After taking the “chill pill” we wound up waiting for a couple of hours so that they could work with other patients who had appointments.
When I finally went back into the simulator I was pretty relaxed. I could still feel some anxiety but I was able to keep the tube in my mouth to separate the roof of my mouth from my tongue, get the mask made and go through the CT scan to get the simulation done without gagging!!! Dr. Samuels and the radiation physicists are now working on a program based on my anatomy! I am scheduled to begin a 6 week treatment program at Sylvester beginning September 15th.
Because of the delay with my CT simulation I missed my swallow study. Fortunately we were able to reschedule this for the second week of treatment. During the test I will be given foods with different textures each laced with barium. While standing in front of an X-ray machine the doctor will make a movie of me eating so that they can analyze my ability to swallow. This will give them a baseline to work towards as they help me regain my ability to swallow after radiotherapy. Sounds like fun!
We ended our visit to Sylvester with a quick CT scan of my chest. This didn’t require any contrast agent and only took a few minutes. No problem!
Today was a tough day. I was forced to face my anxiety over treatment and to look at my need to go through this like a superhero. I have to realize I’m human. I have reflexes, anxiety, stress just like everyone else. Let go and breathe. Everything will be ok. I am safe, loved and strong. I will respond from deep within to overcome the challenges of this disease, the harshness of radiation treatment and face my emotions locked beneath the surface to come out stronger, happier, healthier. Attas 2, cancer 0!