An Update

Sometimes, like this past week, I just don’t know what to write.

But I can start here: thankfully, the sensory overload I experienced a week ago Thursday faded out during the evening. And then I had a good week with a bit more energy than usual.

Yesterday was treatment day, and the nurses tried something different: giving the Trudolvy infusion in one hour rather than two. The day was one of delays, but finally the pre-meds IVs started in late morning: Pepcid, anti-nausea, steroids, Benadryl, and then the Trudolvy (the chemo) at the end.

It turns out that the one-hour version was not a good choice. Once I got home. I was hit with intense upper back muscle pain. Fortunately, I had the presence of mind to immediately take one Tylenol #3, which wiped out the pain in 20 minutes or so. I was thankful for that!

I used up all my energy this morning, though. Feeling rather good, I spent an hour doing little bits of this and that (none of it strenuous) around the house. Then, all at once, my body said, “no more! It’s time to rest! So, I did. Early this afternoon I went in for the injection to boost my white blood cell count and then spent the afternoon resting but unable to sleep, probably due to yesterday’s steroids.  Unfortunately, I was still too fatigued to go hang out with the Hemmingers (you know, my daughter, son-in-law, and the six young-uns) as I do a few evenings a week.

I have a good break before my next medical appointments. On December 23, I will have a PET scan. January 7 will be my labs and visit with my oncologist in Tulsa, and January 8 will be my next treatment day.

On a perhaps unrelated note, each day I wake up early (sometime between 4 and 6 am), have a light breakfast, and spend some time in the Scriptures. I have a set of the New Testament (ESV) with journaling space. My practice is haphazard: so far, I’ve gone through several of Paul’s epistles, and now am almost through 1^st and 2^nd Peter. Normally, I cover just a few verses, ponder them, and write. And then, I go back to bed and usually can sleep for an hour or more.

It is a lovely way to start the day. But I have discovered that I need to spend more time in the Word, which I’m currently doing by reading Dallas Willard’s Renovation of the Heart: Putting on the Character of Christ. He quotes the Bible throughout each chapter. When I leave out that longer reading time, I feel bereft! I much rather end each day with God’s peace within.

 

Sensory Overload

When I got home from my treatment today, I was so sleepy that I lay down to take a nap. After an hour, I got up, and that’s when sensory overload struck.

Sounds assaulted me: my son’s voice, his cough, a loud engine in the neighborhood. It was almost like they smacked into my brain, making me cringe. They were almost unbearable. I had to have silence. I couldn’t even risk a cough jolting me, so I eventually went back to my room, closed the door, and turned off the lights.

But I could not turn off my thoughts, which also were almost physically uncomfortable. I could not listen to music; that would be another assault on my brain. I needed absolute quiet, which was not available. The faint sound of Joseph’s voice as he tutored a math student online came through. And my tinnitus, of course, continued its high-pitched buzz. After another hour lying down, it seemed like things weren’t quite so intense, so I got up again.

And now I sit at my computer trying to explain what sensory overload feels like, for me, at least. It gives me a better idea of what it may be like for my 10-year-old grandson, Josiah, who has autism. Sometimes he sits or walks around the house with a finger in each ear. Or he yells or cries and runs off to his room. I even get the yelling or crying part. My own voice does not disturb me, though I am so tired and sluggish that speaking is a chore. Listening and comprehending are much harder.

Just now, the furnace kicked on. It is annoying. My tinnitus continues. I hear Joseph and his student talking about math concepts. I usually prefer bright light. However, right now, the light feels too bright—but if I turn off the overhead light, the computer screen’s brightness will be too much in the dark.

For whatever reason, I can write. It could be due to the writing getting my thoughts that won’t stop out of my head and onto the screen! But reading or even playing Kindle games seems like too much stimuli.

I’m not sure where I can find relief. My sense is that this disturbance is temporary. I expect to wake up in the morning with it gone, even though the fatigue will remain.

When I say “fatigue,” it is more than the feeling of not having had enough sleep. There is exhaustion mixed in, difficulty concentrating, and general malaise. Those are the days when I must be gentle with myself and refuse to feel guilty when I get nothing done.

But there are several silver linings: my labs from yesterday show that the tumor marker test has dipped down even more, from 34 to 28. Those numbers are well within a normal range. When I told Dr Moussa that I wondered if the pleural effusion was coming back, he had me get a chest X-ray, which showed that the effusion was gone! Very good news, indeed. Before the end of the year, he will order a PET scan to see if any solid tumors have developed.

Next Thursday, I will have another treatment followed by an injection the next day to help my white blood cell count to stay up. And then, due to Christmas and New Year's Day falling on Thursdays, my next treatment won’t be until January 8. What that means to me is my energy level will very gradually increase! Last week (with just one extra week between treatments), I was able to read two novels, drive the car a several times for a couple short errands, and do a few things around the house. Plus, visit the grandkids, of course.

Elijah’s fourth birthday was yesterday, December 2. It was so much fun to see his excitement!