beginning week two

The calendar I use tells me the week starts on Sunday.  Therefore, the first week of therapy, all things considered, went fairly well.  Yes, had some pain, some ringing in the ears, and I walked somewhat slow, but I did have a surgical operation, a full shot of chemo and five days of rad.  Given that the oncology team said that ‘the first couple of weeks are generally good, it’s the last few that are difficult’ doesn’t quite jive with how week two stated out.  It might be the definition of “couple” again.

Had a visit from my daughter (JA) Friday evening and we had a very pleasant day walking around the city on Saturday.  It was a rare treasure being able to spend some quality time with her.  The beautiful day had us out walking in and out of various markets and parks for about six hours.  But during our walk, a stomach cramp started creeping in.  I started pausing for a rest too often for where I thought I was in the process.  I didn’t eat much that day and in the evening, ate a very light soup.

Sunday when I woke up was a different story.  Besides the cramp, which turned into a moderate to severe pain, I was feeling like a slug must feel when a slug feels sluggy.  It was another beautiful day and I was pinned to the couch.  And it was killing me.  GV escorted JA to the train straiten.  I was in a fog when she left.  While they were gone, I hobbled over to the Beth Israel facility which is open 24/7 on 23rd and 7th to see if they could tell me what the pain was about.  GV met me and the wait was two hours.  Two hours, and the doctor touched my stomach and told me “you had better get to the emergency room at the hospital.”  It’s not that he meant to freak me out, only that he didn’t know anything about feeding tube complications but knew that something was not right.

So, we went home, prepped a bag with books, and headed to the ER.  It was the first time in eons that I can remember yielding and taking a taxi.

Apparently I was lucky with my first ER experience, especially in NYC.  The wait was only about 10 minutes, although I was there for a couple of hours.  They drew blood, took an x-ray of my stomach with contrast fluid, and let a litter of saline fluid drip into my veins.  The doc said the x-ray showed I was what they call FOS (full of stool).  This could be causing some of the pressure.  But what was causing the pain?

First things first.  He gave me a slew of over-the-counter stuff to take to get things flowing.  They finally did, this morning.  It was a moment like one I’ve never experienced and not a moment I’d want to re-experience.  No question the moment, or movement, provided relief, but the pain and the slug feeling persisted.

Unfortunately, Sunday was another zero food day.  I should be doing the opposite.   The answer I received from the doctor in the ER was the same conclusion I had come to earlier:  1) The feeding tube was installed to ensure nutrition later in the process.  2) To stomach the feeding tube pain until it’s comfortable, it’s better to take pain pills.  3) Pain pills cause constipation which causes pressure,  pain and a nausea feeling, causing one not to want to consume nutrition.  “Yes, that’s the odd way it work.” he had said.   The fact that a laxative is an important ingredient in the process was somehow left out.  “Everyone is different”, they say.

So went off again to the hospital this morning for the scheduled rad treatment at 845am, and,…..the machine is down.  Those originally scheduled in front of me are still there waiting.  Another “wait” day.  The technician they called in would not get it working until the afternoon.  Until then, some of us were sent over to the Union Square facility and squeezed in.  I got in at 1 pm.

At the rad therapy, I asked the nurse why I felt like a slug and had pain in the stomach.  She said that they slug feeling was the chemo coming on to its full effects (about 6 days later).  It made sense to her, so it needed to make sense to me.  The pain, she says, is because I’m not taking pain pills and that the surgery makes one sore.  I’ve got to buy that.  She says that in a day or two I should be feeling better.

Another slow walk takes us home after rad, I take a shower and drag myself up on my bike for a trip to the office. (Biking is three times more efficient than walking.)  Had to get some things prepared for an important meeting tomorrow afternoon, which I’m now wondering whether I’ll make.  It all seems surreal; but the slug, weak, nauseous feeling is very real.  Need to check the side effects for the anti-nauseous medication they gave me.  The thought of eating anything is repulsive.  I can’t do another zero food day.