Today is busy Monday. It’s catch as many naps as you can on Saturday and Sunday to be ready for Monday, Monday. And you can’t trust that day, or at least some appointment times that day.
We woke up early. As soon as I washed up and took my meds, I set up the PEG tube and did a can. Northing like the aroma of formula in the morning (sigh… coffee.) Ann & I left for Boston around 6:30 am. It was a rugged ride on The Mass Pike, lots of stop and go and snaking traffic.
We arrived at Dana Farber a little after 8:00 am. While Ann parked the car, I went up to the 11th floor lab to have blood drawn and my port prepared for chemo. When I came out of the lab, Ann was there and we walked over to Head & Neck Oncology. With an hour before my next appointment, we sat down next to windows streaming sunlight and read.
At 9:30 am, it was time to meet with the two Dr. H.’s. I reported increased fatigue and pain, both normal for this stage of radiation with booster chemo treatment. My blood numbers continue to be good. After a mouth examination, we discussed pain control. The Percocet are less effective than they were a week ago. My mouth and tongue have large sores. The doctors decided that the best option is moving to a patch. We’ll start small and work the way up (by using liquid Percocet to supplement) until the right level of pain control is reached. With the patch, there are (of course) new side effects to consider. Oh, boy!
At 10:00 am, we took the elevator down to L2 and the radiation oncology department. I scanned in and donned a johnny. One of the nurses came out and said Dr. T. (radiation oncologist) was ready to see me. Dr. T. examined my throat and noted some potential fungal growth on the inside of my mouth and on my tongue. He started me on a med to address that. We also covered much of the same pain management conversation (as with the Dr. H.’s.)
Next stop was a visit with Little Bang, session 19 – 16 to go. Today’s music was from Barbara Kessler’s second recording Notion. Tracks played were “Jane’s Last Day”, “That Hurricane”, “At My Age”, “The Date”, and “Kathy”. Barbara is a Boston songwriter and graduate of The Old Vienna Kaffeehaus.
The day was really rocking along as we headed up to the infusion room. My slot was at 11:30 am and we were there at 11:00 am. There was confusion in infusion. The details are not relevant. Our experience at Dana Farber has been so wonderful and caring. Short story is that we had a two-hour wait, but the chemo was well delivered. While we waited, the nutritionist met with us. She was happy. My weight varied by 0.1 kilograms this week to last. We reviewed my diet for the coming week.
Our ride to Worcester was smooth and easy. I napped part of the way. Once we returned home, I napped the rest of the way. I started the day wary about my fatigue level and increasing pain. At every step, someone at Dana Farber has a proven solution to deal with the problem. The next three+ weeks aren’t going to be easy, but I feel confident that with the care at Dana Farber, it will all be manageable.
And because of you, family & friends, I feel at ease with the coming month. Your support and comfort will see me through. You are the best!
Love…
Richard
Infusion Confusion. Sounds like a late sixties rock ‘n’ roll song.
ReplyDeleteManagement. It’s a wonderful thing. Chemo and radiation are a lethal combo. The amazing thing is that the good cells recover from it. The bad ones don’t. That’s the way we like it.
There’s a lot to management, I see that now. One thing you’ve taught me is that it’s so important to reach out. It’s as important as pain meds and getting though the time. It’s as important as seeing Little Bang as a friend instead of an advisory. It’s important for all of us, even for those of us not fighting an unwelcome alien. Sometimes the Alien can be nothing more than our own doubts. It can feel like no one is listening. But, they are. Sometimes they let you know and sometimes they don’t. But, they are. You have taught me that. And, in so many ways, you’ve taught me to listen.
Sleep the good sleep tonight, my friend. There is a whole week ahead of you … and then it will be down to two plus. Two plus sounds manageable to me.
Love from a four letter state.