That infiltrated feeling isn't a good one

Infiltrate

in-fil-treyt, in-fil-treyt

verb (used with object), in·fil·trat·ed, in·fil·trat·ing.
to filter into or through; permeate.
to cause to pass in by filtering.
to move into (an organization, country, territory, or the like) surreptitiously and gradually, especially with hostile intent.

In nursing, it has a specific meaning.

Infiltration occurs when I.V. fluid or medications leak into the surrounding tissue. Infiltration can be caused by improper placement or dislodgment of the catheter. Patient movement can cause the catheter to slip out or through the blood vessel lumen.

I present these definitions because on Wednesday at ECP, the light therapy on my blood, the needle in my right hand infiltrated. This has happened before. It is not the end of the world. But when it happens, it is painful. I usually know it the minute the needle goes in. It doesn't feel right.

Surveying the damage

Nancy, my nurse, put the large needle in my left arm, for the draw. (Drawing out my blood so that the white blood cells can be separated and treated with UVA light.) Rosalie, a nurse who had a different patient, came over to help with the return needle, the smaller one. She patted my arm and my hand vigorously to get a good vein. Actually it felt kind of like slapping. She put the needle in and went back to her patient.

I told my nurse that it hurt. She took one look and said it was infiltrated. She pulled it out. There was some extra blood. She had to bandage it up before she put the needle in a different spot. My right arm was unhappy.

Meanwhile, my left arm wasn't doing so great either. My hand had a bad case of pins and needles. You can't move your arm, so you can't shake it out. The needle in the crook of my created a dull ache.

For a while I was taking a little oxycodone before, because I had had a few bad instances of severe pain when the needle felt like it hit a nerve. I haven't even been bringing it for a while. But with both arms hurting, I said maybe I would in the future. (Tylenol doesn't do it. I can get oxycodone at ECP, but it's a major production, and Melissa had said to bring my own.)

A nice resident, new on the rotation, came over to talk. I gave him a brief history of my two-plus years at ECP, going back to when I asked my doctor why my abdomen felt like it had a bowling ball in it, and why there were ripples in my thighs, and he said it was graft vs. host disease of the skin.

He thanked me for the info. I should get a teaching fee! Then I fell asleep. When I woke up, it was almost time to leave. I wasn't sure how I slept through being that uncomfortable, but maybe it was a defense mechanism or something.

Threatened, cut, zapped and stitched

Dinner

As I wrote in my Facebook rant on the way to get my Mohs surgery yesterday, the driver was one of the worst, starting with arriving half an hour late and then ignoring my directions to go the fastest way to the Pike, saying,"You're not my mother and I never listened to my mother," leading to "Don't fuck with me or I'll fucking drop you on the road," when I asked him to stop talking on the phone as he was yelling at his dispatcher that it was her fault for over scheduling which was the reason he was late.

It might seem odd to write what is happening live on Facebook but it calms me down, keeps a record, and makes me feel like I'm talking to friends, which I am (thank you very much) because I feel supported when I see the comments.

I totally lost it and put my head down on the seat and was crying so much when talking to Katie that I couldn't get the words out. Popping the Ativan that I meant to save for the surgery, plus talking to her, calmed me down. I was able to joke that the big driver in chains probably wouldn't kill me because it didn't look good.

I need to file a complaint with MART, the MassHealth transportation service, but they keep you on hold so long that I need to do it on my landline when I get home.

My expectations for the Mohs were worse than what actually happened.

I don't think they teach you this anywhere – expect the worst and then you'll be pleasantly surprised if it isn't so bad – but that is what happened.

I had worried that the squamous cell on my calf was so large that they would need to take a graft from my side like they did for the one on my ankle recently. (It was larger than a nickel but smaller than a quarter.) But it wasn't necessary.

I envisioned having to get a lot of hair cut for the one on my scalp, but they only snipped a little.

They give local anesthesia with needles into the area and cut away.

They send the sample off to see if the margins are clear, and if not, they repeat the process for multiple passes if necessary.

The margins were clear on both so I was done with that.

Little scaly spots on my skin, which I was afraid would need to be biopsied, got zapped. Base of thumb, neck, and forehead. Little blisters today.

Margaret picked me up and took me to Needham.

Nick said the bandage looked like a yarmulka.

I reminded him that the last time I was there, he said the bandage across my forehead made me look like a Revolutionary War casualty.

This is all my kind of humor and made me laugh.

He prepared a nice dinner and then we talked for a while and went to bed early for me (9-ish.) I said I should stay there more because I'm away from the distractions at home that invite me to putter around to all hours. At bedtime, the pain on the top of my head and on my calf warranted an oxycodone .

This is problematic because opiates disrupt normal sleep patterns, causing you to feel like you are never totally asleep and to even feel like you're hallucinating. Still, this half-sleep is better than lying awake in pain.

I went to sleep but woke up around 2 a.m. and went down to the kitchen and wrote an email.

Then it was back to bed and up again around 4. I listened to part of Thich Nhat Hahn's Deep Blissful Meditation, drifted back to sleep, woke up at a normal hour and asked for strong coffee.

After a while, I took The Ride to Dana-Farber for an uneventful ECP (from 1 to 4) and a normal ride home with a driver who was no problem except for a stream of consciousness about why he is such a good driver.

When the nurse called earlier rom the Mohs office to check on me, I asked if she thought it was OK for me to go to a reading. She said she didn't see why not as long as I wasn't standing too long or running around.

So in a quick turnaround, Mimi picked me up at 6:45, about 20 minutes after I got home. We went to the Florence Civic Center to hear our former colleague and gifted writer, Fred Contrada, read from his collection, The Columns of Fred Contrada. Fred was recently diagnosed with Parkinson's. The room was full. You could feel the admiration and support.

I had only had a snack or two for dinner. Herrell's beckoned; it was on the way home after all. I thought I would get my usual two scoops of something boring until the woman in front of me pointed out the brownie bowl. That looked good so I took it, figuring I would get vanilla to fill it.

It turns out it came with ice cream, hot fudge, whipped cream and a topping. I choose walnuts.

I sat down with Mimi to eat what I guess you would call dinner.

On the way home the stitches in my scalp started acting up again, so I knew I would need another oxycodone. I took that and as of this writing am wondering how the night will play out.

Tomorrow when I have the time to stay on hold for who knows how long, I will file that complaint with MART.

Lingering side effect from chemo a real pain

The acupuncturist said yesterday that it's good that the needles she put in the soles of my feet made me jump, because people with really bad neuropathy don't feel anything.

I'm not sure if that was encouraging or not because I'm upset that instead of getting better, the neuropathy in my feet has gotten worse.

She said it could be the heat, so I'm hoping that's all it is. Out of all the things that they can do for chemotherapy side effects, curing neuropathy is one of the most elusive. A doctor in the hospital told me to try cocoa butter. I don't think that helped. The drugs that sort of work are intended for other problems, such as the gabapentin (Neurontin), which is an anti-seizure medication originally intended to help manage epilepsy but which is also used for nerve pain and other problems.

Dana-Farber graphic

It is called CIPN, chemotherapy-induced peripheral neuropathy. Nerve damage to my feet. I don't think that in the past almost eight years they have ever felt totally normal. At best I have a little tingling. Sometimes people say I'm walking gingerly, and that must be the reason. I can think of at least one person who asked, "Why are you walking so funny?" and it was actually a doctor in my family who knows what I have been through. This I don't appreciate. I got nervous when I looked it up and saw that it can get so bad as to interfere with activity.

Interestingly, like a person who loses his or her (just can't say their, sorry, even though it's supposedly OK) stutter when singing, I don't have it that much when I run around.

I originally took three Neurontin a day but cut back to two when it seemed to get somewhat better. I have an email in to Melissa to see if she wants me to go back to three or try something else. One time I tried to go off in an effort to cut back on meds, and once it got out of my system I started waking up at night with sharp knife-like pain in the bottom of my feet. I went back on the drug. Another time when I ran out for a few days, I was late on picking up the refill because I thought that since my feet were OK it didn't matter that much.

I started to feel AWFUL. My stomach hurt, my head ached and I felt depressed. It occurred to me to look up gabapentin withdrawal symptoms and those and more were there, including even suicidal thought. I realized what a strong drug it is.

The list of integrative therapies is super long and kind of confusing.

I'm going to wait to hear back or maybe get some cocoa butter and try it again.

Putting pain in perspective

A moment of reflection on pain.

Facebook usually sends photo memories but this week I'm getting blog posts.

This time three years ago I was having a hard time recovering from the kidney surgery I had gotten on Katie's birthday. I remember standing in the kitchen and crying because my pain medication wasn't working and the doctor hadn't returned the call I had placed about taking more.

I wrote that I relished a little bit of pain free time.

Now I'm getting ready for tennis and not in pain at all. I might be in some pain later in the day when the needle goes in my arm at ECP but that will be fleeting and then I'll have dinner with Margaret and Nick.

The only pain is the sound of Donald Trump's voice in the background as I record Morning Joe so I can skip through the commercials and get the latest political news while I eat my cereal.

Send in the clowns

We all know that laughing makes us feel good.

A study released yesterday takes this one step further by showing that laughter actually helps increase tolerance to pain. Published by the Proceedings of the Royal Society B: Biological Sciences in Oxford, the study found that the muscular exertion in laughing triggers increased production of endorphins, the brain chemicals that make people feel good.

It tested resistance to pain before and after bouts of laughter, showing volunteers videos and comedy performances while inflicting pain with a freezing wine sleeve over the forearm, a tightening blood pressure cuff or a difficult ski exercise.

(Wondering what kind of people volunteer for this kind of exercise. I've had enough pain, thank you.)

You know instinctively that laughter makes you feel better (I went to the hospital with a collection of "Seinfeld" DVDs), but the study adds a little something more.

Maybe hospitals should send in comedians or at the very least comedy videos along with prescriptions of percoset and oxycodone.