Part 6.1: Pre-Treatment Planning

Now that our treatment path is decided, the appointments are getting stacked up. I thought I would be excited for this day, but it actually makes me more nervous. It is getting real!

Here are the appointments I have before the real fun begins:

1. Speech and Language Pathologist: Because radiation of the tongue can cause swallowing and speech issues.
2. Physical Therapy: More help for swallowing and speech.
3. Radiation Oncologist: To further discuss the treatment plan, and hear more about the yellow brick road we’re on. When we saw him the first time, he told us not to worry about the details yet — he told us then to think “big picture”. We’re guessing now it’s time for the details.
4. CT Simulation: CT scan of the area to be treated with radiation, so they can program the proton radiation to the exact right places. The good thing about proton radiation is that they can tell it where to stop, so it doesn’t go all the way through the body, which lessens the effects to good tissue.
5. Fitting of a mask:  I’ll have a mask to hold my head and neck in exactly the right position during treatment.
6. Research: A consultation on clinical research studies that may be available.
7. MRI: For use in the CT Simulation planning.

The silver lining is that we’ll be able to eat at Freddie’s Steak Burgers on Friday. Have to look for the small victories.

By the way, when I say “eat at Freddie’s”, I really mean “in the car in the Freddie’s parking lot”. It’s still cancer in the time of Covid.

I had an appointment with a Speech and Language Pathologist today. Radiation causes swallowing and speech issues; she performed a nasal endoscopy. Basically, a long scope with a camera is put up your nose and they look around at your tongue, larynx and epiglottis to understand any issues you may have with swallowing.  They have you drink, eat some applesauce and eat a Lorna Doone cookie to see how you swallow before radiation starts.  The most interesting part, is I was able to see the tumor on my tongue.  Given that I am an experiential learner, it’s official, I have cancer!

Today’s next appointment was with a Physical Therapist who specializes in head and neck cancer patients. The goal is to get my neck in as good of shape as possible before the radiation begins to negatively impact my motion. As the sessions progress, starting with the third or fourth week, my neck will swell and the skin will burn and begin to form scar tissue. Mobility lost can sometimes be tough to regain.

It appears that Mayo will be our home away from home.  At this point, for the chemo and radiation, I will have 6 appointments per week, 1 or 2 consultations with the Radiation Oncologist per week, 1 session of physical therapy for my neck and 1 with the speech pathologist.  I am sure there are more to come, but we haven’t got that far yet.

I am getting used to the idea of having cancer, but I am struggling when I think too much about the treatment and its daily impact.  I will struggle to eat and there may be weeks where I will be in too much pain to talk.  But I just need to concentrate on getting through the five appointment on Friday where they will get all the images required to set up the radiation sessions and to build the mask that I will use each session.  It makes it easier for them to ensure that I am in the correct position for the radiation.

I am trying to learn how to relax to cope a bit better.  I have been messing around with Yoga Nidra. I am early in the process, but the premise is to get you to relax by breathing deeply and trying to escape to your happy place (remember I am early in the process).  With that in mind, Suzy and I have vacationed (RVed) in Canada a few times.  Canada National Parks has Red Chairs in many of their parks, looking over a lake, or the ocean or a large valley – hundreds of sets of chairs.  Every time we saw them, we tried to spend time relaxing in them.  They had this special feeling.  Well, with all of my issues just around the corner, I am thinking of those Red Chairs more and more.  It seems silly, but I have been thinking that I should have a real one instead of just imagining being in one.