Duck, duck, goose? Nope, just a hallucination!

This morning, like most mornings in the last 4 weeks, I got up at 5 am, got myself ready, met Lois outside, went to the proton center, got strapped to the table, got zapped 3 times, and then released. Afterward, like we've done every Monday and Thursday, we walked to the Mays Clinic to do a blood draw and then back to the car to drive home. This morning was number 19 out of 20, which means tomorrow is "graduation day." I'm so ready! When I discussed the radiation/chemo treatment re-do with the oncology clinic four weeks ago, they said side effects could be more intense in the second go around. Once again, they really need to adjust their language because I was not sufficiently prepared mentally.

In June (13th) of 2016, I wrote a blog post likening chemo to a boxing match. I had to go back to read it because this week I have felt like I've had someone next to me constantly sucker punching me. I guess the cumulative effects of daily proton radiation and nightly chemo doses have caught up with me. I've had stomach issues brought on by medication and diet, occasional headaches, and fatigue, all of which sound pretty normal in this situation, right? The mild headaches make me paranoid but go away quickly, the fatigue can be handled with exercise and/or naps, and we incorporated laxatives to help alleviate some of the stomach issues. However, in the last week or so I've had multiple middle of the night vomit sessions that are a cross between morning sickness and a tequila hangover. I finally figured out how to manage it fairly early in the week, but I was starting to think this was the thing that would push me into throwing up my hands in defeat. 

Luckily, my support system is not interested in letting me utter the words, "I can't do this." And even though it pissed me off to hear it, everyone I talked to said things like, "Just make it until Friday." "You've done harder things than this." and "You will get through. You always do." I hate to admit that they were right, but here we are with one more radiation session in the morning, 2 more chemo doses followed by a break until May, and I'm in one piece. I haven't had my head in a trashcan in several days. The newest trends in cancer treatment (and especially brain cancer treatment) is a "cocktail" approach where they throw multiple treatments at it at once. This is all well and fine until the cumulative side effects start setting in. Then it feels less like a boxing match and more like being stuck between two sumo wrestlers with your feet off the ground.

One of the places the protons are zapping is in the occipital lobe, which processes visual stimuli. I keep my eyes closed when they do it, mostly because the mask is so tight I couldn't open them if I wanted to, however, I see flashes of light when the proton beam is concentrated on that area. Sometimes the light is in lines and once it was even green! From a neurological learning perspective, it's actually pretty interesting to experience this. I've noticed that my vision each day has been a little different (in a non-positive direction). First i started to notice that in my missing area (the left visual field) I was seeing things that were not there. Not objects, in particular, but just images that made me think there was something there and when I'd look there was not anything there. Before I figured out this was going on, I caught myself ducking (thinking there was something sticking out that I might hit my head on), walking around areas that were empty, and stopping while walking through the house to avoid oncoming imaginary objects. Once I figured out this was happening, which took all of about 30 minutes, I figured out that I needed to look around to compensate. Have you ever been in a city and seen a person walking down the street in such a way that it is obvious that they are mentally ill in some way? Often they are having an animated conversation with no one, sometimes they are behaving oddly, and once I saw a man counting words on signs to appease his obvious OCD. It occurred to me as I was evaluating these left hemisphere hallucinations and obvious behavioral responses, that to a passerby, I could be the ultimate in entertainment. Can you imagine the call? It might go something like this: 

Dispatcher: "Hello, 911. What is your emergency?"

Caller: "Well, I was driving down X street and I saw a woman walking on the sidewalk. She is ducking, stepping high over nothing, and not able to walk in a straight line." 

Dispatcher: "Does she appear to be hurt? What does she look like? What is she wearing?"

Caller: "She does not seem to be hurt. She has short brown hair with male pattern baldness. She's probably 5 feet tall and weighs 100 pounds or less. She's built like a twelve year old boy. Otherwise, she is clean, wearing a blue sweatshirt, black yoga pants, and tennis shoes." 

Dispatcher: "Do you think there are drugs involved?" 

Caller: "Quite possibly. Send the patty wagon and a straight jacket!"

In addition to these occasional hallucinations, I've also noticed that I can see even less than before in the areas where I previously could still see some. This is to be expected because radiation does cause some damage and some swelling, even if it's protons (which will preserve so much more than photons would). The damage will heal and the swelling will decrease with time. In a few weeks I will go back to the neuro-opthamologist for retesting to see what, if anything, has changed. We hope that they will then get those ugly glasses ready so that I can have more freedom. But that's for another day and another blog post...stay tuned for that update when I have one!