To Port, or Not to Port

I’ve had a severe phobia of needles for as long as I can remember. I like to think it all began when my sister and I were kids and we discovered a tree in our backyard that had long and (surprisingly) sharp pine needles. We came up with a game called “Doctor Doctor”, where we would take turns chasing each other around our backyard with a pine needle yelling “Doctor Doctor!” (real creative, I know). If you were caught, you’d be pricked with the pine needle until you could either A) fight your way free or B) scream and cry enough to make the other person feel guilty and stop.

Ironically, my life nowadays is like a never-ending game of “Doctor Doctor”. Except I’m the only one getting pricked and options A) and B) don’t work anymore (and are frowned upon when you’re an adult in public).

When you have a needle phobia, cancer is something you want to avoid if you can. Cancer treatment is basically the equivalent of becoming a human pincushion. Luckily, modern medicine has come up with this thing called a port (port-a-cath). A port is a little device that gets surgically implanted under your skin (usually on your chest). A small catheter connects the device to a large vein in your neck. The port can be used for receiving cancer treatment and for drawing blood. I once heard someone refer to it as “the window to your heart”. Under normal circumstances, I would never want a “window to my heart”. And if I did have one, I would keep that window boarded shut. But this stupid little window actually has a lot of perks:

For one, it saves the veins in your arms (which can collapse and become very fragile from the chemo). Once the veins in your arms are damaged, it becomes harder for the nurses to access them (meaning you might get poked by a needle more than once). Another great perk, for me, is that you don’t need to have a tourniquet around your arm (the tourniquet is a huge phobia trigger for me). So, after chatting with my oncologist, I agreed that the port was the best option for me. The surgery was then booked for August 14th (shortly after my Hawaii trip and 3 days before starting chemo). In case you missed it, my last blog post outlines the timeline of my diagnosis and the start of treatment.

When I land back in Vancouver on Friday, August 10th, I receive a call from a random doctor (I believe he was filling in for my oncologist) who was wondering why I was booked to do the operation under general anesthesia (as it’s normally done when the patient is conscious or semi-conscious). He explains that if I do it under general anesthesia, I would need to be intubated and it would be a more serious operation. I explain that I never requested to be put under general anesthesia and that there must have been a misunderstanding. Then, he then starts trying to talk me out of getting the port altogether. He tries to convince me to do my first round of chemo through my arm, and if it’s too much for me to handle, I can always choose to get the port surgery at a later date. He then talks about the possible complications of having a port. I feel super confused and spend that weekend reconsidering the port altogether.

I wait until Monday to try and get ahold of my oncologist to see what she thinks. I’m now leaning towards not getting the port because I knew I’d need a million needles for the rest of my life anyway, so I might as well get over my fear and avoid an extra surgery… right?

When Monday finally comes, I can’t get ahold of my oncologist. I start to panic because my surgery is booked for the following day and I’m still feeling very conflicted. When Tuesday comes (surgery day), I still can’t reach her. I debate it over and over in my head and finally come to the conclusion that: I don’t want the port anymore.

Lucy and I are near the hospital, so we decide to go in person to tell them I won’t be going ahead with the surgery and to apologize for waiting until the last minute to let them know. When I arrive, they want me to speak with a doctor before leaving (turns out they don’t like it when people say “yeah nevermind, no surgery for me thanks, bye!”). So Lucy and I sit down with a doctor who makes a lot of valid points. “Your oncologist thinks this port is the best decision for you, which is why it was the original plan you agreed on together. If you wait and decide to get the port after you start chemo, your immune system will be compromised and surgery could be more risky”. And with that… I decide, “Ok well it looks like I’ll be getting surgery today!”. Very luckily and coincidentally, I hadn’t eaten in a few hours so we were good to go.

I know surprisingly little about what’s involved in the operation. A radiologist comes to see me before the surgery and introduces himself. He explains “I’ll be running a catheter through your neck…”. I want to throw up at the thought of this, “My NECK??”. He seems surprised by my reaction. With a blank look on his face he asks “Is… that going to be a problem?”. Looking back, this moment perfectly sums up cancer treatment in a nutshell. It’s an awful and horrible thing, but there’s no point resisting. You just have to lean into your new pincushion lifestyle.

About 10 minutes before the surgery begins, I finally get a call from my oncologist reassuring me that I should, in fact, get the port. I’m high on Ativan and Lucy and Carlos are both dying laughing at me as I struggle to put a coherent sentence together. I tell her I already have the IV in, I’ve taken Ativan, and I’m about to go into the OR.

The surgery was pretty quick (I believe less than an hour). I was conscious throughout it but also very high.

I have a love-hate relationship with this little guy. For some unknown reason, I was given a “dual” port (meaning the device is twice as big because it has two access points instead of one). Every nurse/doctor that encounters it says “Huh! I’ve never seen a dual port before”. I feel slightly cursed with this dual port because ports need to be “flushed” once a month to avoid any clogging. Because I have a dual port, I technically have two ports that need to be flushed every month. This means that I get pricked by a needle twice instead of once (slightly defeating the purpose of the port in the first place!). Also, for some reason, the brand that makes my port had the brilliant idea of making it purple. As someone who has essentially translucent skin, my port looks like a giant bruised lump that sticks out of my chest. It’s a constant reminder that I’m sick and I can’t wait for the day that I get it taken out.

All that being said, it’s made so many infusions so much easier for me. I’ve used it for chemo, regular blood work, and a blood transfusion. The first time I had it accessed was for my first chemo and it was just 3 days after it was implanted. Not only was I stressed because it was my first day of chemo, but it was still so bruised and swollen and made the whole process extra unpleasant. But ever since then it’s been A LOT easier. It took me a long time to embrace the port. For the first couple of months I refused to even touch it. I hated how I could feel it move up and down my ribcage whenever I put my arms above my head. But now, although I don’t love it, I’m much more comfortable with touching it and having others touch it also.

In the end, I’m happy I got it. I’m especially happy on the days that I’m sitting in the chemo chair and the patient sitting across from me is in pain because the nurse can’t find the vein in their arm. Sure, it’s big, it’s purple, and I was left with a very visible and crooked scar… but it has served me well and I haven’t had any complications so far. If you happen to be someone who is planning on getting a port, make sure you ask your health care team exactly what model you’ll be receiving to avoid any confusion.

It’s up to me when I decide to remove it. But considering the fact that I’ll need infusions every 3 weeks for the next year (at least), I figure I’ll hang on to it until then. I’m trying not to rush things lately. I’m trying to embrace my port, my scars, my body, and my short hair exactly as is. It’s hard, but it also feels like the ultimate lesson of patience and self-love.

xx

Sarah