Hole

Ports were developed expressly for the administration of chemotherapy to cancer patients. They addressed a couple of specific issues in cancer care.

Chemo can be very damaging to blood vessels. Many drugs are caustic and can cause sclerosis of the blood vessels and damage to soft tissues around the vessels. Port lines terminate in very large blood vessels close to the heart so the risk of damage was much lower.

Chemo patients are also at a significantly increased risk for infection. Ports are implanted between the skin and the muscle so they are entirely within the borders of the body. In order to use the port, you push a very large needle through the skin and into the port. This is called accessing the port. When you are done using the port, the needle is removed and the port no longer has contact with the outside environment. They were designed to be accessed occasionally for treatment and to be deaccessed as soon as that treatment was done.

Like so many other things in medicine, ports were not designed with mast cell patients in mind. I am part of a cohort of patients that currently have ports for chronic, continuous use. My port is accessed all the time. There is a needle going through my skin and into my port all the time. The needle is changed once a week and I take the needle out for a few hours sometimes if I am going swimming or taking a bath. Otherwise, the needle is never out.

My port is a bit unusual in that it is very difficult to get the needle into the port without going straight in through one spot. Most patients who have accessed ports move the needle to a different spot when they change it weekly. This allows the skin to heal a bit between accesses. This has never worked for me. For this reason, over the last three years, I have developed a literal hole in my chest over my port where the needle is placed.

Last spring, I accidentally tore the needle out of the port. It made a hole that was already pretty big much bigger. I started deaccessing for a few hours a couple of times a week to try and help the skin to heal. I slathered cromolyn cream all over it and hoped for the best.

In June, I had a temporary IV line called a midline placed in my arm so that I could stop using the port for a few weeks and give my skin a rest. Unfortunately, that didn’t go well. Aside from all the pain in the ass things about having a line in your arm (which I had forgotten), using IV Benadryl through the short line caused phlebitis, a form of vasculitis that affected the vein where the line terminated. I was diluting it to a ridiculous extent (1:50) and it was STILL causing really severe pain both while I was pushing it and for hours afterward. We pulled the midline after a week.

The result of always accessing in the same spot is not just a hole but a hole surrounded by thick scar tissue. My nurse was able to get it accessed at different angles by pushing through the scar tissue but it was shockingly painful. The port was getting inflamed and it was getting to a point where the inflammation looked just like a pocket infection. It wasn’t infected but the fact that I could no longer tell the difference was alarming.

The pain surprised me. I can tolerate a lot of pain. This is unbelievable. The hole is now large enough that my body recognizes it as a wound. I have been really tired and achy lately and I think it’s because my body is expending energy trying to close this hole.

I did not expect the emotional effects of this situation. Memories from 2014 keep cropping up. My life is unrecognizable compared to the life I had when it was placed. I knew it was necessary but I was really nervous. I didn’t like having a PICC line but I was finally used to and troubleshoot it without panicking. I was worried that the port would get infected or I wouldn’t be able to access it myself. It was the coda to a year of abysmal health.

It’s funny to reminisce about how anxious I was about getting it placed because my port is my lifeline now. It gives me confidence. It makes me feel secure. I have travelled to the other side of the world with this port. It has allowed me to work full time. It has saved me countless ambulance rides and admissions. It is part of me now, a part that has given me back a lot of my life. A part I don’t want to use.

Because we are concerned that the hole makes me much more susceptible to infection, we decided to just cut our losses and pull the port and place a new one on the other side of my chest. I will be getting this done in the next few weeks. I think things will stabilize without the inflammation.

For me, Septembers will always be tied to pumpkin flavors, the smell of falling leaves, harvest moons, and ports.

Becoming reality

I scheduled my colostomy surgery about six weeks before I had it.  That afforded me a comfortable window of time to overthink it and work myself up.  I am a logical person.  I am a scientist.  I understand the risks and rewards of procedures and meds and so on.  But I am also human.  While I knew it was the right decision, when I was alone, I often thought about all the ways it could go wrong.
One of my friends asked me if I was ready for surgery a couple of weeks before I went in for it.  “I wish I could just do it right now,” I answered.  “Once it’s my reality, it’ll be fine.  This thinking about it all the time is exhausting.”  I think that sums it up well.  I just need these things to happen because once they become my reality, I just deal with it and move on.
Part of why mast cell disease is scary is because so many things can go wrong.  That doesn’t mean they ever will, but even if you feel confident you can manage your symptoms, you can’t help but think about all the horrors lurking in the dark places of the world.  But it’s not productive or comfortable to live your days living afraid of all the terrors that might befall you.  When living with mast cell disease is your reality, you just do what you have to do to get through your day.  It’s okay to worry as long as it doesn’t keep you from living.
I got a port placed today.  I have known this was coming for some time and I know plenty of people who have them.  It was not something I was logically worried about. 
But last night, the mental gymnastics started and suddenly I was worried about IV contrast accidentally being used and my friends and family reading my journals after I died from the reaction.  There was no reason to think this would happen.  It was pure ridiculousness.  But that doesn’t mean it’s not scary. 
I told a friend about it.  “Oh, I thought I was the only one who did that!” she said.  No, you’re not.  We all do it, whether or not we admit it. 
This morning I arrived at my hospital at 6:30am to have my port placed.  I met with the PA doing the procedure at 7.  He had read my entire history (“Which is really long and interesting,” he noted) and did some research on masto.  He went through the entire procedure, what materials would be used, what meds would be pushed, and made necessary changes.  (No Tegaderm, no chlorhexidine, absolutely not under any circumstances IV contrast.)  He asked what I wanted for premeds and ordered them for one hour before the procedure exactly as I requested, right down to the diluted Benadryl pushed over 10 minutes followed by a slow flush.  The nurses and technologist were excellent and the procedure went very well.  I am very sore and tired, but I have an accessed port and no PICC line and no reaction to speak off.  That’s what I call success.
Whenever my body changes in a noticeable way, I show it to my animals and let them investigate it.  Tonight I sat on the floor and Story came over and sniffed at my port and mouthed at it a little.  “It’s okay,” I told her.  “My body used to look different but now it looks like this and it’s okay.”
And you know what?  It really is. This reality is not so bad at all.
 
 
 

PICC Lines

I talk about PICC lines, why you get them and what the risks are.  Tune back in later in the week when I show you how to access it safely, change the dressing and draw blood for labs.

In this clip, I say that PICC lines are “inserted in central veins.”  This should be “peripheral veins.”  Sorry for the flub.

 

This is what being sick looks like


I don’t like when people tell me to be positive.  I am quite positive, generally.  But pretending that being sick is this perpetual ethereal learning experience that imbues me with this magical understanding of life is not realistic.  I am allowed to be upset.  Most days being sick doesn’t bother me.  Sometimes it makes me sad.  Today is one of those days.
I am aware that I often don’t look sick.  But this is what being sick looks like for me.

 
 
It looks like an entire cabinet full of oral meds, IV meds, ostomy supplies, PICC line supplies and miscellaneous medical stuff.
 

 

It looks like meds and epi at the bedside, always.

 
It looks like blown veins from poor IV access.

 

It looks like low blood pressure and tachycardia.

 
 

It looks like a medical alert bracelet.

 
It looks like a colostomy bag and swollen, hard, scarred abdomen during a bowel obstruction.

 

It looks like industrial strength equipment to take a bath.

 

It looks like pitting edema.  (This picture was taken five minutes after I rolled up the sleeve over my PICC line; the impression stayed for hours.)

 

It looks like flushing even after 120mg IV solu-medrol, 100mg IV benadryl, 40mg IV pepcid and one dose of epi.  (On top of daily meds.)

 
It looks like getting oxygen during anaphylaxis.

 

It looks like feeling like you’re winning when you get to infuse at home with your new PICC line.

 
It looks like needing IV benadryl in the middle of the night.

 

It looks like being grateful for a central line.

 

It looks like slow pushing IV meds.

 

It looks like weird rashes all over my body.

It looks like sharps containers full of reminders.
 
This is what being sick looks like.