April 16

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Five Weeks…
Eleven: Doctor appointments.
Four: Scopes through his nose into his throat.
Two:  Scans, one CT and one PET
Two: Blood draws.
Three:  Appointments for me. Started out routine and ended in an ultrasound and
mammogram for what resulted in uncertainty and a recheck in six months.
One: Dermatology appointment for me to remove a precancerous spot on my forehead.
Two:  Dr appointments for Robby.
One:  Swollen knee on Michelle needing x-rays and a brace. (The tendon below her knees are too short. Something she was born with.)
Two: Kids enrolled in college for next year.
One: Kid starting a new job. (Lockheed, yay CJ!)
Two: Birthdays (Stacey 19 and Robby 16)
One: High School game night at our house
Five: The number of shifts at work Robby has to be driven to.
One: huge insurance fiasco landing us in a complaint and appeal cycle.
Countless: Blessings and signs that God is not surprised by any of this and He, not naps, will sustain us.

It’s been a whirlwind!

We met with the Radiology Oncologist and she went into more detail of what to expect from radiation. We scheduled the placement CT scan. This is where they will do a scan and make the mask that will hold his head in place during the treatment. That will happen this Friday.

We hope to have the chemo teaching session some time this week too. Monday we see the Medical Oncologist and if we’ve had the teaching session by then, he will give the go-ahead to begin chemo.

We learned from today’s appointment that the chemo medicine we’re using starts with a double dose a week prior to beginning radiation.  Hopefully that’s next week.

We made a little mistake…
We asked the Radiation Oncologist what she thought of the chemo medicine we chose. She said she would have chosen the other option. Of course she did! Ha!  She gave her input and shared why she would have recommended the other one for him. After some discussion I reminded Carlos that she didn’t say anything we hadn’t already considered. She shared nothing new with us. We had already weighed these things and made a decision.  He went back and forth but as the day went on, he decided to leave it as it is.

As for the side effects we can expect, but hope to avoid or minimize…
The radiation can cause hair loss on the side and back of the head due to where it has to hit to get the lymph nodes that are involved. It will cause a painful throat. Like swallowing razor blades or shards of glass. His taste buds will be damaged and food and drinks will taste disgusting. Taste might take years to normalize again. His salivary glands will be damaged and it may take years to regain his ability to make saliva, or to make an adequate amount. As the tumor breaks down, an excessive amount of mucus will form, which can cause gagging and irritation. He already is experiencing a bit of this just from the irritation of having the tumor there.  They did say if it gets real bad they can give him a suction machine to help.  His skin on his neck might get irritated or burned. He might get sores in his mouth, and his teeth and jaw could be damaged. He’ll wear a mouth guard to try to protect that area.  They will give him creams for the skin, mouthwash for the sores, and sprays to keep his mouth wet.  Fatigue is a huge side effect as well.

The Chemo has it’s own set of things.  It won’t cause hair loss but has a high incidence of skin rash on the face, neck and shoulders. Some get such a bad rash that they have to hold off on treatment to let it heal to avoid infection. Others get a more mild rash. It can be painful and itchy. They will give him creams to help with that. The rash often spreads to the inside of the mouth too, so with radiation causing sores and chemo causing a rash, his mouth could be very painful.  It can cause nausea so he’ll be given anti nausea meds with treatment, as well as benadryl to reduce any possible allergic reactions. Fatigue is a highly common side effect too.

We’re praying he falls in the mild category of all these side effects but it was daunting to listen to the most common things people encounter, some of those I mentioned are in 100% of those being treated this way, the rest are above 80% incidence of occurrence.

All we have wanted from the beginning was to get rid of this thing. Now that the steps are almost completed and the start date is in sight, I can’t help be feel anxious. I’m back where I was at the beginning, tossing and turning at night, unsure of what lies ahead and what it’s going to be like to actually go through this with him. I can’t even fathom how he must feel.

Even though Winter and Spring seem to be duking it out for determining ther weather here, Carlos got our swamp cooler prepped for when the heat decides to show up. He’s gotten a few other projects finished but the rest of what we’d planned to do will have to wait. I’d hoped this was the year we’d get grass in the front and back yards, but what’s one more year?! I didn’t pray for patience, but somehow I’m getting to practice it a lot! Haha!

My brain is tired but my heart if full.  The meals on appointment days have been so helpful! Thank you for walking alongside us in this way.

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6 thoughts on “April 16”

  1. Hi Shannon,
    I am so sorry that you and your hubby are going through this. I “highly recommend” that you get and have the suction machine on hand , because if you wait until when you might need it to get it at the house it could be a problem .
    Praying for your husband and God’s hand of healing on him.
    Love you guys


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