Saturday, June 29, 2013

Let's Not Do That Again, Eh?

On Tuesday I was scheduled for an appointment with one of the Nurse Practitioners in the Head and Neck Center and then my weekly infusion of IV fluids.

One's first stop for the day is usually Lab Services where a phlebotomist installs an IV for the day if you don't have a port. I don't have a port because I will have relatively few chemo infusions. I only get 3. Some people get 8 or more.

If you've been following along you know I was having some struggles, especially with my stomach. One problem was that whenever I took a swallow of liquid I would experience a burning splash of stomach acid into my esophagus. That made it difficult to drink as much fluids as I should have but I hoped I was drinking an adequate amount.

Since my stomach is giving much such trouble, car trips are not much fun. We travel the 12 miles from home to Dana Farber every weekday for radiation treatment. As a new patient I have late afternoon radiation appointment times that always involve stop and go traffic. Next week I move to 11:00am for the rest of treatment so it should remove a fair bit of traffic from the equation.

Anyway, with stomach trouble and long stop and go car trips I don't arrive at my destination in the best mental condition. On this morning, I discovered just how bad was feeling when the receptionist who checked me in showed just a little extra compassion and I almost burst into tears.

When it came time to get that IV Tuesday morning I discovered that I had been pretty severely under-hydrating. The first phlebotomist had two very painful misses in my arm. I usually have great veins and no problem getting needles or IVs into them. These hurt like hell.

I cried.

She called for backup.

Phlebotomist Number Two arrived and took me to a different room. Way in the back.

Where no one could hear me scream.

But she was good. She examined my arms and hands very carefully to find the best spot. When she put the third IV in the back of my right hand it was perfect - almost painless like it should be. I wanted to give her a hug.

Not a good start to the day.

The next appointment was with a Nurse Practitioner on my team, NP Kate. We hadn't met her yet. After introductions she asked, "So, what's going on with you?"

I told her I had several issues but felt like I couldn't really whine in my first week. She assured me that every patient whines.

Wonderful Wife and I had brought a list. Serious stomach discomfort was top of the list. Not quite nausea. Sometimes outright pain. Always "uncomfortable". And that painful reflux when drinking.

NP Kate said right away that the Decadron and the Cisplatin can both cause excess stomach acid. That's easy to fix: take Prilosec every day.

The other main "complaint" was the unpleasantness of the side effects of the anti-nausea drugs. They can try to fix that, too. In the first round of chemo they make sure to give you enough to counter any nausea. But in the next chemo round they will reduce the dosages of some of the drugs and see they can't make it more comfortable.

With a few day's perspective, I realize that I could tolerate the same experience again in the second round. I just can't have expectations that I'll be functional.

For me the hardest part of this first week is I have not been able to use my eyes. During the drug side effects I had changes to my vision that made it uncomfortable to focus on text either on a page or a screen. Then during the stomach acid few days trying to focus on visual things made me queasy. Thus the dearth of blog posts - I haven't been able look at a computer screen long enough to write one. I haven't even been interested in watching TV or movies because that kind of visual focus also made me feel bad.

I spent a lot of time laying on my back in dark rooms starting at the ceiling.

Anyway, I was much happier after our meeting with NP Kate and Dr. Chemo. We had strategies to address the problems. And they clearly care about making me as comfortable as they can.

Then it was off to get that much needed infusion of fluids.

The next time I need to get an IV is Tuesday. I am determined to be super hydrated.

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