Saturday, August 2, 2014

Port Drama

July 1, 2014

Finally it is here, my first day of chemo.

I still have a slight fever when I wake up at five, but it goes away as I get going. I realize I might not be able to take a shower for a few days, so I wrap my bag in saran wrap and hop on in. I dress and check my notebook for prep protocol.  No food or drink after midnight.  Darn!  Did I mention that I went to bed at 7:30 last night? The last drink I had was a sip of water to wash down the Tylenol.

Just as I am getting ready to leave, Brett stops by with some flowers and a lasagne.  This will make a delicious dinner tonight.

Kaileigh, Steve and I make the long drive to the hospital. We park and go into the main building, where they will put in my port.  We are processed in quickly, and I get into the prep room early. Things are sailing along. I need to change into a johnny and some slippers.  Of course I am cold, so the nurse brings me one of those heated blankets.  Ohhhh!  It feels so good.

All of the pertinent information is taken, my name and birth date recited to everyone who enters the room.  If Steve or Kaileigh didn't know my birth date, they know it now.

Nurse Kate takes my vitals.  I have a fever of one hundred and one.  Of course she is not happy with this. She realizes she has just wrapped me in a warm blanket, and decides to wait and take it again in a little while.  It goes down to one hundred.  I explain to her that since I have had my ostomy operation I have a fever every night around bedtime.  Sometimes I have a low grade fever during the day.  I don't mention that normally my temp runs low.

A physicians assistant, Laura, comes in to explain the port procedure to me.  The port is a little self healing button that will be inserted under my skin so that the needle for the medication they need to give me can be inserted easily.  It is easy to access to take blood and administer medication, and will go though sturdier, internal veins. It will have a line that runs into my jugular vein, so it will look like I have a vein running from the button which will be on my upper right chest, to the base of my neck. She tells me what will happen and how I will feel.  I will be awake and aware for the operation, but I will be given a drug that will make me not care.  She and the nurse will talk to me throughout the procedure, to let me know what is going on.

She signs papers, I sign papers.  Kate comes back in to take my temp.  It is still at one hundred.  Laura is not pleased.  She goes to talk with Dr. Safran. They are worried about an infection.  I tell them about my fever problems at Roger Williams Hospital, but they don't have paperwork on that, so it is not helpful.  I explain that I have a fever every night, and a low grade one into most days.

Together the Doctor and the physicians assistant decide that instead of a port, I should get a picc line, a peripherally inserted central catheter, in my left arm. This is a small double ended IV tube that will go into my arm, and into a vein that runs beside my heart.  They will insert it while I am awake, and with no pain medication. Once this is agreed upon, there is more paper work and more signatures required.

I am wheeled into the room where they will insert the picc line.  There are large machines in this room, with one they will be using to do a live x-ray of me while they are inserting the line.  It will be above my face and very close, but not touching it.  The PA initials the arm where the picc line is to go in. I scoot over from my transport bed to the table beneath the big round screen. A long plexiglass board is slid beneath me, which extends out at my shoulder so I can rest my left arm on it.  They cover me with a plastic and paper blanket to keep me warm.  Thank goodness, it is cold in there! The nurses put on their lead armor.  These are dresses made of lead. They are all different and colorful, red, blue, one is polka dotted. They look kind of anime and cute.  They cover their faces with paper or plastic sheilds, so that it is getting difficult to understand what they are saying.  I am asked once again for my name and birthdate.  My bracelet is checked as well as the paperwork to be sure the information matches. I am asked why I am in this room.  The nurses check and double check everything.

I am not sure of the exact order here, but these things all happened at some point. My upper arm is washed with a blue liquid, which turns my arm, chest and neck blue.  The PA and the ultra sound technician look at my veins to select the route they will take up my arm, around my arm pit, over and into a vein running beside my heart.  Once a vein is selected they start the operation.  They numb the area on my arm where they will be inserting the tube.  I feel a sharp pinch, and after that I am left to my imagination.  Can I really feel the tube being pushed into my vein?  I can't ever imagine how they are doing this.  There is pushing and pulling on my upper arm and skin.

At one point I get a stabbing pain. I try not to jump, and tell Laura as calmly and urgently as possible.  "That hurt a lot, and now my hand is tingling."  Somehow, I think she knew this.  She apologizes and asks if it still hurts.  I imagine that she was going around the curve near my arm pit and jabbed the vein.  How do they even get that tube to turn, I wonder.  I really don't want to know or have it explained, I just want this to be over with.  I am feeling very agitated, but force myself to lay there calmly, trying to figure out where they are in my body. Finally, we are done.

Showing off my tribal jewelry
Katie wheels me back to recovery.  Before we started all this, she had promised me the best English muffin I have ever tasted. She asks what I would like on it, and offers peanut butter, jelly or butter.  I ask for jelly and butter.

After I gobble up my muffin, I get dressed and walk over to get an x-ray.  They are still trying to figure out the source of my fever, and want to rule out pneumonia.  I get the x-ray standing up, something I have never done before.

I am brought back to the room I was in, and wait for a wheel chair to take me over to Fain 3, which is across Fifth Street. As I leave, Kate and Laura bid me farewell.  They know I will be back within the next two weeks to have the picc line removed and a port put in.

We wind our way though the hospital, and take an elevator down to the basement. From here there is a tunnel that goes under the street, which I never thought or knew about.  We take the elevator up to Fain 3 and I sign in.

I am taken to the Mega suite today.  This section of the hospital has a great name, like it is something really big.  It is named for the mother of one of the nurses I met during my training session.  They donated money in honor of her when they were building the new wing, and her last name was Mega.

These treatment rooms are set up like the rooms I saw on my first visit.  It is very busy because of the upcoming Fourth of July Holiday, and they need to utilize more rooms.

We have the luck to be in this wing on piano tuning day. At first we think someone is warming up very badly. Kaileigh, Steven and I joke about it and wonder when if will ever get started.  When I hear them playing very out of tune intervals, I figure out that it is being tuned.  This continues on for the entire time we are there.

A nurse introduces herself and I immediately forget her name. She takes my vitals again, I still have that fever. This leads to another discussion with Dr. Safran. When she returns, she has blankets, IV meds, a urine sample container and blood sample bottles.  While that nurse was out gathering supplies, a phlebotomist comes to draw blood from my right arm.  I recognize the hot sauce bottles  from the tests they did at Roger Williams Hospital.  They need to heat up my blood to look for infection.

They start me on a test run with my picc line.  They will run saline through my line to make sure it works. When it is started, I get that alcohol taste in my mouth again. I had thought the foul taste must be from medicine, but it is from plain old saline solution. It is such a weird sensation.  The line is running and will go for about an hour.

I need to pee, which is fortunate, since they want a urine sample from me.  I push my IV tree into the bathroom to get the job done. These samples are pretty complicated to get if you are a female. First you have to wipe with a special cleaning wipe, front to back one side, front to back the other side, before you can pee. You need to attempt to catch the pee in the small cup without getting it on your hands or all over the cup.  Once that is done, you need to find a place to put the cup while you wipe, hold up your dress, pull up your underwear, pull up pants, straighten dress, trying all the while not to get caught up in any of the lines hanging off my arm.  Then, there is the mess to clean up from the cup, because of course the pee doesn't go into the cup right away.  The trash can lid opposite the toilet is the most convenient place to put it at first, so that needs to be cleaned, and then, the edge of the sink where it ended up while I cleaned the trash can lid.  I wish a paper towed had occurred to me.  I wipe off the bottle, wash my hands, dry my hands, dry off the bottle, wipe down the sink, and I'm done.  Did I mention there is a big sign on the door which says "DO NOT LOCK THIS DOOR!"?  All this while worrying that someone will forget to knock on the door, which of course, someone does.  How does life get so complicated?

When I return to my pod, they draw some more hot sauce blood from me before I am hooked up to my first two doses of medicine.

We are all very hungry.  I have been given some cookies and cranberry juice from the snack cart, but this is only a tease.  I have had only that English muffin and a juice since eating very little for dinner last night. Kaileigh orders a Cajun chicken pizza from Pizza Pie-er for lunch.

Kaileigh picks up the pizza.  I am not sure I can eat it, I had read in that big binder I was given that you should not eat during your treatment. I check with an aid, and she assures me that I can.

Since I thought before all this started I might have a gluten allergy, I have not had pizza in a couple of months.  It tastes so good, I don't even mind that it makes my mouth raw.

I get another two bags of medicine.  As the day wears on, the piano is becoming more and more in tune.

Before they give me my chemo, I need to watch a video about the pump I will wear for 46 hours to receive the medicine.  It explains how it works and what to do if it should malfunction in any way.  After the 46 hours are up, a visiting nurse will come to my house to unhook it for me.  This all has to be done very carefully, since the chemo is a biohazard.

When they hook up the pump, they have to run through a test dose to make sure I don't have a reaction and that everything goes through okay. At five forty five, I can finally go home.  I feel very good after my day in the hospital, I didn't even need a nap today.  True, I sat in a chair all day, so I shouldn't be very tired.  I am relieved to have started my treatment, and glad to be heading home.

Another dressing challenge has come my way.  Now besides trying to figure out how to best hide my ostomy bag, I need to figure out how to get the lines from my pump through my clothes and onto my body without making a tangled mess. Complicated indeed!


  1. No one is forcing me to pick a favorite sentence, but IF someone were, it would be hard, but I'd pick "They look kind of anime and cute."

  2. What a day. Could I have seen you this day and you seemed calm and normal? I think so!

  3. Your lovely blog makes it all seem so normal and funny: you are a gem, Miss K!

  4. Sending good energy your way. I think they should have a nurse help their patients do the urine samples, I hope they read your blog.

  5. I thought the whole thing was kind of funny. Really, how do we make life so complicated for ourselves? There must have been a better way to get that job done. And I was wondering, how many men, besides the nurses who assign these tasks, realize how different things are when you are a woman in this situation?