ports

Warning, am bored, am still a little sick, have digital camera, need to entertain self.

This is a sort of tongue in cheek look at ports.  If you’d like to read a more serious post describing ports, please visit Ports Revisited.  If you keep reading here, you’re going to be subjected to my own unique brand of gallows humor.  Just a warning.

This post is solely Hodgkin’s Disease / cancer related; if you want to skip down to the Civil War stuff, go to the Civil War posts and enjoy the second post about ……. the history of Hodgkin’s Disease. haha. Actually Hodgkin was alive during the Civil War, there’s a tenuous connection. Ok. If you’re still here, you’re reading a post about cancer ……

Since I’m bored, I decided to write about my port.

No, unfortunately I’m not talking about Admiralty law. The law of the high seas. You know. Arrrrgggggghhhhhh. Pirates! Didn’t you read the whole “I’m talking about cancer” disclaimer above? Don’t you know I make it a practice not to talk about the practice of law even though I’m a lawyer? I’m talking about a mediport for chemotherapy. (Sorry about so many cancer-related posts this week. These things run in streaks, you know?)

People keep asking me about my port — mainly people starting or going through chemotherapy, ¹ but also people who are just curious. People seem to be more curious about the port than anything else (I even find lots of people searching about them arrive here through random searches of Google or Yahoo). So … in the interest of hopefully cutting down on how many emails I get about ports (ok, I’m kidding, I love hearing from readers even if it is about ports) AND BECAUSE I LIKE HELPING PEOPLE :) … Here’s what I can tell you. As always, your mileage may vary.

What does it look like?

All right, for the morbidly curious or for those who really want to know because they are considering getting one … I got tired of the questions, mustered up my courage, and took a picture of Victor. By the way, I did name my port. Victor. As in I love the smell of napalm in the morning … Smells like … VICTORY. (Or the death of thousands of Reed-Sternberg cells. Same difference.)

(Any doubt that this is my port can be dispelled by noting the copy of “Gray Fox” among other Civil War titles in the background on the shelves.)

This is what the port looks like all hooked up for chemo or any other infusion. A port can be used not only to deliver chemo, but for routine blood draws and even to just give you nice drugs like fluids. When it is not hooked up, it looks like a little bump underneath the skin about the size of a nickel with a scar above it. That’s it.

(Generally, your port is only hooked up like this for an infusion or for a test. I had to have a PET scan following some blood work, and to avoid two needle sticks, I told them to leave the port in — which is why I have it accessed at home.)

Here is a close up of my chest port scar. It’s located about an inch below my collarbone on the left side of my chest (usually ports go on the right; I had too much supraclavicular and chest lymphadenopathy going on in the right side).

OK, now let me let you in on some secrets about the port. The stuff your doctors may or may not tell you but I think are important from a patient’s perspective.

(You may not want to continue if you don’t like gallows humor. I like gallows humor very much. And if I’m not employing it, chances are I’m REALLY sick, so take it as a good sign, not a bad.)

1. Get a power port!

Not just because it sounds so much cooler when you strut around chemo, pulling your IV pole behind you …. “My port’s a POWER PORT.” Actually you want a power port if possible because they are really much more useful. This is the type of power port the Cleveland Clinic gave me.

A power port comes in handy because it can be used for CT scans. CT scans use a special pump to inject the dye that can destroy or damage a regular port. A power port is specially designed to be used for CT scans.

2. They make two incisions.

Getting a port is usually an out-patient surgery. A general surgeon or a vascular surgeon can put it in (mine was done by a vascular surgeon). They will give you drugs to go to sleep or you can go hardcore with just local anesthesia and bug the surgeon like I did. (My surgeon was so cool.) The surgery took about half an hour.

The surgeon makes an incision to put the port in on your chest, then he makes a smaller incision near the neck to tunnel the catheter. (The tunneling felt FREAKY) I have a scar on my chest but no scar in my neck, though if you look very carefully and know what to look for, you can see the line running up in my neck vein.

Pain wise … I was awake. The liodocaine (the local anesthetic) burns and stings. Other than that, you mainly feel like someone is tugging and pulling at you. Scale of 1-10 with 10 being please kill me now, the port surgery was about a 2-3.

Visibly, unless you’re showing off your chest, no one should know you have a port unless they know something about them and then who cares? My scar is hidden when I wear a sports bra, so even then you can’t see it. Good job, Doc. :)

3. Needles?

Yeah. There are still needles. They use a special type of needle to access a port. ² You do get stabbed, except there is no need to hunt for a vein and rather than getting stuck in your arm, you get stuck in your chest. By the way, stabbing a port is called “accessing it.” Nice euphemism, but it just means stabbing.

Your chest has less nerve endings, so the stabbing isn’t close to as bad, especially since they almost never ever miss. Plus you can put cream on it to numb it before you go get stabbed if you really are afraid of needles (I never used the cream so I dunno how well it works). Also, there is no cumulative damage to your arm, hand, or other veins.

4. Don’t expect everyone to know what to do with a port.

Unfortunately while any good cancer or chemotherapy center will know what to do with a port, don’t be surprised if nurses or techs in other areas don’t know how to access it. Don’t be surprised if you even hear “what’s a port” and be sure to warn the x-ray people that it’s there so they don’t flip out about the weird thing in your chest.

Also, it’s a good idea to carry your port card (basically just a card that says you have a mediport) because it can set off medal detectors, though usually only REALLY sensitive ones (I’ve had no problem at the airport with mine).

5. But using it at least for chemo will save your veins …

Certain chemo drugs, including many used to treat Hodgkin’s, can literally burn you inside out. And if the IV leaks, you’ll end up with a painful problem. The port saves you a lot of that problem with ruining your veins, plus if your doctor is like mine, he will love to get your blood as often as possible. (Hematologist is medical speak for vampire. I’m positive.)

6. I forget it’s there. But you do gotta keep it flushed.

Seriously, I am a little leery about touching the spot, but most of the time I don’t even think about my port. You can’t really feel it or anything like that.

When you’re out of treatment, you have to get your port accessed and flushed every six weeks. It takes like five minutes, but it something to consider in keeping your port long-term. I’m kind of attached to mine (cue laugh track), but Dr. S is too conservative to let me take it out short of 2 years anyway.

Doctors seem to have different “rules” on when you can have your port removed. My doctor insists on remission for two years. Your mileage may vary.

7. Badge of Honor

When I see someone with a port scar (sometimes they are higher on the chest than mine for example or the scar is bigger for some reason) or pick up on the neck catheter, I think ah there goes another chemo warrior, a survivor like me. Seriously.

8. Sometimes your doc will attack your arms anyway.

Sometimes for various reasons, you doctor will have to get blood drawn peripherally anyway. (For example, if there’s something wrong with the port or he suspects an infection in it … or for certain tests, or because you said something mean and he’s mad at you and trying to make you life miserable … you do know I’m kidding about that last one right?).

9. It doesn’t save you from shots.

Yup, Neulasta (white cell booster) and Arnasep (red cell booster) seem to be given as shots, so you’re still getting stabbed for those. The port just reduces the stabbings somewhat. Basically anything you can use an IV for, the port can be used for.
10. Having a port can be fun.

A confession. One time I was goofing around with one of my local running friends and we told the rest of a group (who didn’t know I had cancer) that I had been abducted by aliens. When they guffawed, I showed them the scar and said that was the tracking device. You should have watched their jaws drop. (OK, so you guys all know I have a good sense of gallows humor! This proves it!)

More information on ports: Ports Revisited.

1. I wish no one ever had to go through chemotherapy again ever. [↩]
2. It’s called a Huber Needle, if you really want to know. [↩]

use the stinkin’ port!

When I was diagnosed with the Hodge, I got something called a Mediport surgically implanted.  A “port” is basically a disk shaped, small object implanted in the chest that allows them to draw blood or deliver chemo without having to ravage your arm veins.  As anyone who recalls my first few CT scans prior to diagnosis knows, I don’t have the best veins.  For one thing, I am kind of thin and for another I seem to have inherited my father’s bad veins.  This resulted in my arms looking like I went a round with Ali after the CT scans.

So although it was a minor surgical procedure to get the port implanted, I am happy to have it.  Its located on my upper left chest (not far below the collarbone).  I had a pediatric port placed because I had such bulky disease in my chest.  It was the smallest size the surgeon had available.  I know this because I stayed awake through the whole surgery, talking with the surgeon.  :)  He ran tris so we talked about running.

The port nicely tucks away under my sports bra strap and it generally doesn’t bother me except sometimes when I am driving in the car and the seat belt rubs against it.

This last week or so I have been going through some of the initial tests I went through when I was diagnosed with the Hodge.  Among these was the combination PET/CT two weeks ago.  I’ve had a PFT and tomorrow I am supposed to get a MUGA scan.  I am not sure I am going for the MUGA scan.  I am tired of being stabbed.

The PFT is a pulmonary function test.  As regular readers here know, I have been having breathing problems, so the PFT was pretty important for me.  One of the chemo drugs is known to cause lung problems.  I seem to have developed lung inflammation and my PFT showed I had decreased markedly in function.  Whether it was due to the chemo or not is still being determined …

I don’t mind the PFT.  It doesn’t involve needles.  Basically you just breathe into a tube a few different ways and that is it.  I could do a PFT every day and not be all that bugged or bothered.

The PET and the MUGA — the MUGA is a heart scan because one of the drugs can cause heart damage — both require needle sticks.  Those do bother me.

However, the outpatient radiology department won’t use the port.  They don’t “like” to use the port, apparently.  Instead they attack my arms or hands.

This begs the question: what the heck is the point to having the port?!?  I had surgery to put it in.  It works great.  Use it!

My father, who also has a port after his own battle with non-hodgkin’s lymphoma, has run into the same issue: the radiology department just flat out doesn’t want to use the port.

Getting a needle stick in the port hurts a lot less than them hunting in my arms.  Only once have I had to be stuck more than once with the port — multiple needle sticks are common for me when the vampires attack my arm or hand veins.

Maybe I am being a little overly sensitive to the issue, but darn it, it’s my body and it’s been through enough pain and sickness and suffering with chemo.  It really ticks me off that radiology won’t use my port for these procedures.

That’s why I have insituted the needle stick rule.  From now on, the vampires are going to be informed that they get ONE chance at the arms.  They can have up to three tries at the port, but its just one try on the arms or hands.  So they better make it count.  No more of this multiple stick business.  From now on, I am sticking up for myself.