Sometimes a seemingly small experience can teach you a lot about what having cancer is like, and why it’s so emotionally exhausting. My recent experience with my goddamn portacath is one such experience.
What is a portacath, you ask? Picture this: you need chemo, which is basically horrible poisonous chemicals that make you feel like shit. If the nice folks at your oncology clinic put that stuff directly into your arm, it tends to pool there and hurt. A lot. So, instead, a lot of cancer patients get a medical device called a portacath, or port for short, inserted into their body. It’s basically like an access point that plugs into a tube that is then inserted into a major vein, so that instead of the chemo pooling in your arm, your badass heart immediately pumps that shit all around your body, so it can do its cancer-killing magic. It’s a surgical procedure, having it inserted. Mine is in my right chest, since my cancer was in my left breast and we figured I might have a mastectomy at some point. You can actually see my port under my skin, as well as feel it–it’s a small, hard, lumpy thing.
The way you use the port is this: they take a needle with a tube attached to it, and they stab it into where the port is. I can tell when they’ve got it right because it feels kind of like it does when you plug a cord into the wall, kind of that “thud” or “pop” feeling. The needle they usually use on me is an inch long, but a lot of folks have theirs accessed with one that’s 3/4 of an inch long. And it’s kind of a wide needle. To make it so it doesn’t hurt so much going in, the nice nurses at my oncologist’s office usually numb the site up with some lidocaine first before they stab me.
Now, a port can also be used not just to give you your chemo, or other drugs, or fluids; it can also be used for blood draws. When you’ve got cancer and you need blood draws on the regular, it’s helpful to have a port, because then your doctor’s office can use your port to do blood draws, instead of having to insert an IV in your arm. Your veins can only get jabbed so many times before they’re gonna start to be pretty beat up, and become harder and harder to use. And when, like me, you’ve had a mastectomy, you can’t use that side of your body for your blood draws anymore, leaving just one arm to bear the brunt of pokes. So, a port means your poor arm veins don’t get so beat up over time.
That is, if your port is working properly. Alas, mine is not. I went in for a routine blood draw a couple months back, and although they could push fluid into my vein through my port, when they tried to suck blood back out, nothing came. They yanked on that damn syringe, but nothing would come out. I believe my exact words when this happened were “Oy vey.” Hahaha, just kidding, I said “Motherfucker.”
The protocol when this sort of thing happens is that they pump some stuff in there called TPA. I don’t know what that stands for, but it’s basically stuff that will dissolve a clot if there’s one blocking the end of that tube in your vein. So, the nice nurses at my oncologist’s office (have I talked about them before? Seriously they’re all such nice people, and so insanely competent, seriously, they’re total rock stars) squirted some TPA up in there, and then I waited for the TPA to work. 90 minutes later, they tried to draw blood out again, and again, nothing would come out. So we waited another hour, to give the TPA more time to work, and again, nada.
By this time, it’s like 6PM, so they said, “Come back tomorrow and we’ll try the TPA again.” So we did. Again, nothing. So, my oncologist says, “Well crap. I guess I’ll send you for a dye study.” Here’s how a dye study works: they put you in an xray room, and they inject some dye in you that an xray machine can see, and then they see where the dye goes. If it goes through the tube like it’s supposed to, and the tube doesn’t show any kinks, then you know your port hasn’t gotten twisted or otherwise messed up. If it shows a kink in the tube or the dye doesn’t go where it’s supposed to, well, you know it’s time for a new port.
So, last week, on my cancerversary (March 26–the day I got my biopsy results), I went in for my dye study, which wasn’t at my oncologist’s office–it was in the main part of the hospital, where my oncologist works. Now, the nurse who attempted to access my port was a very nice, friendly woman. But first off, she was going to jab that needle in there without lidocaine–I had to ask for it first. And then, when she stabbed it in there, she missed. So when they pushed in the flushy stuff they use to flush out the line, it burned. A lot. That’s how you know the nurse has missed the port–if it’s in there right, it makes that thud feeling, and instead of a burning sensation, you taste the weird metallic antiseptic flavored stuff they’ve just pumped in your vein. If they missed, it fucking hurts, and you taste nothing.
4 more pokes later, most of those after the lidocaine had worn off, and she still didn’t have the needle in my port properly. We figured this out because the xray machine (remember how they were using one to see if the tube was kinked?) showed the needle was in the wrong spot. Also the burning.
By this time, the radiologist who was going to look at where the dye went was in the room, along with a guy who operates the xray machine, and another nurse. His name is Walter and he’s my new favorite person. Walter, if you’re reading this, please know you have my undying gratitude. Walter gave me more lidocaine, poked me one more time, and pushed in the flush–and I tasted it. VICTORY!
Except that victory was short lived, because when Walter pushed in the dye and we looked at it on the xray, everything looked fine. But there was still no blood coming back out. This time, I didn’t say motherfucker. Not out loud, anyway.
So, we tried yet another dose of TPA. That makes 3, for those of you keeping track at home. And I sat for 2 hours. And it still wouldn’t give a blood return. Walter was extremely apologetic, but I told him it’s certainly not his fault. We talked about next steps–he said “Well, it flushes just fine, so you could put stuff in there, but that’s gotta be frustrating not to be able to use it for blood tests.” You’re telling me, Walter.
After the test, I bumped into my oncologist in the hallway. He’s mulling over our next steps. Maybe we put in a new port, or maybe not. It is, after all, surgery, which comes with its own risks.
When I got home, I had a big streak of dried blood over where the port sticks happened. After I wiped the blood off, there were 3 very visible poke spots, all at least a centimeter apart. Unsurprisingly, the whole area was sore to the touch, like it had been bruised. And the next day, the area did look bruised.
I mean, in the grand scheme of things, spending all that time at the hospital, for naught, isn’t a huge deal. I don’t have a job anymore, and the kids are at school/daycare, so it’s not like I’m having to leave work or find a babysitter or whatever to go to these appointments. But, on the other hand, it adds up psychologically. Especially on one’s cancerversary. There’s pain, for starters, but more than that, time spent in the hospital is a reminder that I’m living with a terminal illness. It’s in my face that I can’t just be like “My chemo was last spring, I don’t need this thing anymore” and have my port removed.
Don’t get me wrong, I’m grateful for Walter and my oncologist and all the other amazing medical personnel I meet who are helping to keep me alive, despite everything my stupid body is doing to kill me. To kill us.
And yet, this is hard. Really, indescribably hard. And I wish I didn’t need all these wonderful people.
And I wish my fucking port would just fucking work.
9 thoughts on “Fuck You, You Stupid Portacath”
I opted to not do a port because well I had no insurance. First round was easy. Second round my arm burned like fire from the inside. I still remember the ice packs the nurses threw on to help but didn’t. So I got a port. A week or so after I finished my last round my entire right arm swelled up with fluid….turns out the port caused a clot in my arm. Idiot me thought it was pretty cool that my arm was so big. Until a surgeon unexpectedly showed up and told me the port needed to come out immediately. I remember texting my boss telling him I couldn’t come to work because I was going into surgery like right now. Ha.
Sucked because I knew I had shit-ton more tests ahead of me and the port made it easier.
Regarding the lidocaine – they would give me lidocaine cream to put on my port ahead of time. Once I forgot they told me I had two options – either they could put in lidocane now via a needle or I could just stick the chemo needle with going numb. Either way they said I was going to be poked with a needle without being numbed. So I opted to go without lidocaine – from then on I didn’t bother because it was one less thing for me to do/remember (chemo brain and all).
The nurses snuck me the port after surgery which was pretty cool them.
Aggghhhh! You get the dang thing to make like easier and then it adds to the whole pile of more appointments, more tests, more problems. Stupid port. 🙁
Mandi recently posted…If Perjeta Were A Person I Would Hug It
Mom’s port was “touchy” too. She could receive very well but when giving blood she had to turn her head to the right for any blood to come out.
We found this out purely by accident. Her port was on the left and she typically watched as nurses and techs did anything. After several times of not getting blood through the port, we had a new nurse and she was determined to try anyway. Mom and I were having a conversation I was on her right so she turned her head to face me to say something and the blood started flowing. Eureka!
So we all learned when anyone needed her blood to wasn’t allowed to look anymore.
I am SO sorry you are going through this. The same damn thing happened to my son’s portacath twenty (TWENTY!) years ago when he was undergoing chemo for leukemia at the ripe old age of three! We continued to use it for chemo infusions but all his labs had to be drawn peripherally. SUCKED!!! Eventually, he got a fever of unknown origin, and since we couldn’t rule out a central line infection, they had to pull it. By then he was on maintenance chemo and it wasn’t a big deal… but all those extra blood draws & pokes REALLY was disappointing & frustrating, after all he’d already been through. I hope that, in twenty years, you come across a blog someone has written about their experience and can say, “I can relate! Hang in there!” ~Tammy, (mom to Justin, 23 years old now and a cancer survivor!)
I probably said it wasn’t AS BIG OF A DEAL as it could have been… but, as you can imagine, it was STILL a big deal–especially to the kiddo having to GET all those extra painful pokes!
Tammy, give that boy (I guess I should say man!) a big hug from me!
I hate this for you. I hate it. Motherfucker, indeed.
I just wanted to leave a note to say I am so sorry you have to go through this. I started my career working in the Evelyn Lauder breast center at Memorial Sloan Kettering and I have seen what you have to go through with all this mess: ports, chemo, radiation, surgeries, bloodwork etc etc etc. Thanks for sharing your thoughts and feelings.
Love, a random reader who saw this pop up in her Twitter feed this am.
Ok I “liked” this. But I don’t really “like” it. I wish you didn’t need all those wonderful people, either. But I’m very glad that you have them. <3
Comments are closed.