Yesterday was the fifth treatment, and the end of the first of seven weeks.
It started in the usual fashion of getting checked in and back to treatment room #4. I asked the tech, Ashley, what the machine in the treatment room was called. She said, "Oh, you mean the gantry?" That makes sense to me since, typically, any moveable structure that can be equipped with tools or instruments is called a gantry. So, I asked, "What is the part that the protons emit from?" She replied, "It is just called the nozzle." OK, so there you have it. I was thinking it might be a little more high-tech, but nozzle works for me.
As usual, I predicted that we would get in position on the first try. They locked the mask in position. I scooted up, so my forehead was tight in the mask, and shifted my shoulders slightly to my left They looked at the dot on my chest and said, "That looks good." I slightly opened my mouth as they left the room. Seconds later, I heard the buzz as they took the X-ray. I waited for a minute or so, and they didn't come back. I'm not allowed to talk through the mask, since it changes my position, so I laid there patiently as Van Morrison's "Brown eyed girl" played (3:05)
There is always a waiting time since there is only one Cyclotron and four treatment rooms. The Cyclotron can only be used in one at a time.
I'm not normally a fidgety person, but having to lay in one position, perfectly still, for minutes on end is a little much to ask of anyone. After Bruce Springsteen's "Born to run" (5:34), Ashley said over the intercom, "We're ready to start."
The door opened after the first position, and the other tech, Bridget, came in the set for the second position. She said, "You nailed the positioning on the first try." She could have left it at that and allow me to bask in my moment of glory. But no, she had to follow it up by saying, "You'll never do that again!"
Friday is assessment day, where I meet with the team to see how it is going. I met with Kim the RN first, who took my vitals and asked specific questions about any changes since treatment started. Things like sore throat, nasal drainage, dry or burning skin, return of any sensations - she was fishing for things that might be related to the treatment. I have noticed areas that have been numb for months are now starting to do crazy nerve things again - specifically the worm crawling sensation. We took that as a good sign.
Next I met with Dr. William Hartsell MD. Dr. Akthar is out for the week, so Dr. Hartsell was filling in. He explained that all of the doctors review all of the patients in treatment, so that they are up to date on each individual case. That was pretty impressive. I had a few questions that I had the feeling would not have good answers. Again, all I have asked from the beginning is for them to be straight with me and tell me everything.
Starting with my left eye. This only began on Sunday, February 21, 2021- literally one month ago. Saturday the 20th, my eye was fine, and the next day it was no longer tracking with the right. The sixth cranial nerve, the Abducens Nerve (VI), is now effected. The abducens nerve supplies the lateral rectus muscle of the human eye. This muscle is responsible for outward gaze.
Without getting too far into anatomy again, the Oculomotor nerve (III) supplies all of the other muscles that control the eye. They all seem to be working. This is significant since, so far, the (V), (VI), and (VII) cranial nerves all connect to the Pons area of the brain stem, where (III) connects directly to the mid-brain. The whole idea behind my treatment plan is to keep it as far away from the brain as possible, and kill it before it gets there. If (III) gets involved, it would have a direct path to my brain.
What's worried me all along is that the cancer was always tracking along the nerves. My question has always been, "What happens when it runs out of nerve to track on?" Squamous cell carcinoma is known to be a very aggressive cancer, and it is very unusual that it hadn't jumped off the nerve track long ago and invaded other soft tissue and bone.
It started on Cranial nerve (V) the Trigeminal nerve. When symptoms started pointing towards Cranial nerve (VII) the Facial nerve, being involved, it made sense since there are three bridges between (V) and (VII). But, there is no connections between (V) and (VI), the Abducens nerve. How would (VI) be involved?
Long story short, the cancer has jumped the nerve track and has begun to spread out to other areas. The good news is that I had my CT Sim and High resolution MRI's after the cancer began to spread. So, the treatment plan includes those areas. The bad news is that it took two and a half weeks to put the treatment plan together, so the cancer had a bit of time to continue spreading before I started treatment.
For about the last six weeks, I have been scratching the left frontal scalp area of my head, and driving Kathie and Jamie crazy. "Stop scratching your head! You're making sores on your head." they would say. No, I was scratching my head because there are sores on my head. The cancer had spread up to that area under my scalp and the sores are beginning to look like epidural squamous cell carcinoma. They are targeting the cancer that spread under the scalp, and will keep an eye on the sores on my head.
Next question was, "Is there something going on in my Mastoid area, it hurts likes hell?" Your Mastoid Process is the rounded bone that you can feel just behind your ear, and just above your jaw bone. Many of us when we were kids, or as a parent, you may have had a kid with an infection of the Mastoid. Pretty common. A week of antibiotic and it's gone. I've gone through four rounds of different antibiotics, and no change. His answer gave me pause.
There is a lymph node just inside from the Mastoid that lit up like runway lights on the high resolution MRI. It is the Posterior Auricular Node. No one who is battling cancer wants to hear that it is in a lymph node. That never seems to end well. They knew it was there, it is a part of the treatment plan, and they have been blasting it for a week now. They could also see the other lymph nodes in the area, and they were clear. It sounds like good news - they have it covered.
I had to ask him about the smell that I mentioned yesterday. Whenever the protons are flowing, I get this weird smell, as it turns out, no one else can smell. It is a reaction of the smell sensory glands when the protons stop close to the sinus area. It makes sense since I could still smell it when I was outside.
My last question was more trivial. "How many protons are being launched into my head on any given treatment - are there 12, or 1200, or 12,000"? He said he would have to ask the Physicist, but would guess it is more like 12,000,000. I suppose that when you think that a proton is only one part of an atom, there is plenty of room for 12,000,000.
I brought up the fact that my insurance finally agreed to pay for chemo at Northwestern, and should we consider it, knowing that lymph nodes are involved? They decided on the plan to do proton first, then chemo later. He didn't think that they would deviate from the plan and said that squamous cell carcinoma masses respond better to radiation than chemo.
I thanked him for being straight with me.
Next, I met with my nutritionist (Oh, boy). She asked what I have been eating. I told her about my breakfast bowl, and to my surprise, she thought it sounded great. She is all about protein during treatment. She said that I should be getting at least 25 grams of protein, at least three meals a day. She started naming off lots of examples such as nuts, beans, chicken breast, etc. I can't chew anything crunchy, so that takes nuts out of the equation, so she suggested peanut butter. I can't say that I have ever been a fan of peanut butter, and Kathie has been suggesting it for some time now, so I think I might have to give in and buy a jar. Maybe I can put it on celery - no, can't crunch celery. Ugh, I don't think I can handle eating right out of the jar. Maybe on some ice cream - now we're talking,
Part of the problem is that, thanks to the involvement of the Facial nerve (VII), I can only taste sweet, spicy, and bitter. You may find it interesting that the left (VII) nerve controls the taste of the middle half of your tongue, and the right (VII) nerve controls the taste on the tip (sweet) and back (bitter) of your tongue.
"You should eat Mexican food", she suggested. "It is one of the highest protein menus out there, and you can taste spicy." As it turns out, the Jalapeno Grill is less than a mile away to the North of where I'm staying, and Sergio's Cantina is less than a mile to the South. "You should walk to one or the other for lunch every day." Great idea, but I don't think I can afford that. I'll have to do some shopping.
It was a day to process a lot of thoughts. It was a nice day out so I took a walk along the Fox River. I woke up this morning with a smile on my face, and an eagerness to see what's next.
Kathie and Jamie are both sick so I'm staying in St. Charles this weekend.
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