When Is a “Chemo Port” Not a Chemo Port?

When is a “chemo port” not a chemo port? When it’s a heart rate monitor. Except that my emotional brain can’t tell the difference.

For anyone unfamiliar with cancer chemotherapy, a chemo port, or subcutaneous implantable catheter, is a device implanted under the skin (usually on the chest) that is accessed during an infusion to enable easy mixing of the chemo drugs with blood within a major blood vessel. This avoids a good deal of injury to any smaller blood vessels, were you to get chemo drugs via an IV to your arm. (For more info, see this post.)

This is what I had under my skin for a year while I was undergoing chemotherapy infusions. It took some getting used to but I never reached the point where I could ignore it.

As much of a blessing as the chemo port is, having a foreign object pushing up from the chest wall under your skin can give “Alien” (as in the movie) vibes. For me personally, the implanted chemo port was more psychologically taxing than I anticipated, and as soon as all my infusions were done, which took a year, I had it taken out ASAP.

So almost three years after its removal, the chemo port is spooking me again, this time in the form of an extended Holter monitor for continuous heart rate recording, which I’ll have on for almost two weeks. It’s taped to the skin in a fancy patch that you can exercise and shower in, and supposedly you forget that you’re wearing it and go on your daily routine as normal.

But for me, it’s bringing up the spectre of chemo port, and memories of discomfort and pain I felt having that bulge stretching my skin of my chest. I chant my mantra of “it’s ON, not IN” in an effort to distinguish between the port and monitor, but the longer than it stays on, the more anxiety I feel about it.

My Holter monitor (ePatch) sits on the side opposite from where my port did, but it takes up the same amount of space in my head.

All those emotions about the lack of control over my own body, feeling so abnormal and outwardly looking “sick” (not to mention fear of death) are rushing back. The Holter monitor peeks up from the neckline of my shirt, hooks my car’s seatbelt and often seems to be in the way. I find myself moving away from other people in fear of having them knock it or hug me too tightly and cause pain, even though the monitor doesn’t deserve the same apprehension that the port did.

I’m removing the Holter patch today and sending it back for analysis, so that’ll be a big relief. But the power of this reaction is another reminder of the depth of fear that the cancer experience placed within me.

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So why am I wearing the heart rate monitor anyway? I was having little cardiac “episodes”, particularly over the last year, and this was one of the (many) reasons for discontinuing aromatase inhibitors. Mainly these were sensations of skipped or extra beats or an odd “fluttering”. I’ve already had an EKG and echocardiogram, neither of which apparently showed anything abnormal (I haven’t received a final report of my echocardiogram but had been told that the cardiologist would contact me if he found anything problematic, and it’s been a week and a half, so I’m guessing everything’s okay?).

Okay, it’s off. But it’s left its mark on me. I’m hopeful I can get rid of this impression faster than the port’s. Chant with me: “ON, not IN…”

The Holter monitor was the last step in looking for arrhythmias or similar issues. And wouldn’t you know it? The further I’ve gotten from stopping aromatase inhibitors, the fewer episodes I’ve experienced and haven’t felt anything distinct since I got the monitor. What I’m feeling is very occasional, subtle “sensations”…but these may turn out to be nothing. I’m okay with that. As a matter of fact, I’m not even worried about what the data might show.

I just want this thing off me.

Cancer’s No Big Deal…Except That It Is

You’d think that by now, over a year since finishing most of my breast cancer treatment, I would drop the subject and get on with things. But, no, cancer isn’t like that — and apparently, neither am I. Just when I think I’ve moved on, something else comes up. So here goes:

Breast cancer has had me see-sawing between two states of mind.

On the one hand, when I was going through treatment, I didn’t want people to feel uneasy talking to me (because they do!). I downplayed the cancer diagnosis and tried to be as matter-of-fact as possible, all with a pleasant smile and carefree shrug. Yeah, surgery-chemo-radiation, no biggie. My focus was on mitigating their uncomfortable reactions — in my mind, they were the ones needing the comforting and support.

That’s because telling someone I had cancer often made them squirm. They didn’t know the “right” thing to say, afraid of hurting or upsetting me, even though the reality was that what was inside my head was far worse than anything they could have said. So I always tried to crack a joke about my bald scalp or discolored nails as if to tell them I’m cool with it.

This extended into post-treatment life. Since I feel a little distance between the disease and me, I don’t always remember that I can catch people off guard when I talk about cancer. People still blush and stumble on words, looking like they want to change the subject. I always try to make it no big deal.

But on the other hand, the reality is that cancer is serious. Treatment can be all sorts of horrible and there are no guarantees about anything. Everyone who’s had breast cancer has to live with the uncertainty of its return. And with the large number of women who have experienced or are still wading through different stages of treatment, there’s a lot of suffering going on.

I know, I know, I know. Things will be fine.

Except when they’re not.

And so, I struggle with people telling me not to focus on the past. Obviously, that would be helpful. But it’s not easy, because even when treatment is over, the fear remains. Cancer strode in like an arrogant rake, dragged me around the block a few times and left an indelible mark on my psyche. My health is back and I’ve regained a lot of physical strength, but there’s that niggling fear that cancer will return and take it all again, and the emotional pain associated with that potentiality stifles any celebration. It was easier to focus on getting through chemo and radiation than to wander into the Wild West of the future.

So I fight with myself. Sometimes I need to talk about how miserable it was and how angry it made me (one side of the seesaw), all the while not wanting to make people uncomfortable about it (the other side). That, of course, is not a successful combination. Ultimately, I put on a brave face, take a deep breath and quietly hurt inside.

But don’t worry, after I write about it, I can shake off these feelings and I’m okay.

Except when I’m not.

I Didn’t Expect THAT: Chemo Port

When you’re told that you have cancer and will need the full complement of treatments, you focus on the concepts of surgery, chemotherapy and radiation. Chemo, for example, can be frightening to think about because of purported its side effects, so you gloss over the details. But when you get down to a practical level and start learning about exactly¬†how the infusions will take place…

I knew I needed chemo. I assumed that it would be administered intravenously, as in, into an arm vein with the bag o’ drugs hanging from the IV pole. Ahhh, but the drugs are caustic and would cause damage to a smaller vein, so to avoid that, they go directly into a major blood vessel to allow for quicker mixing with blood, faster circulation through your body and much less discomfort. This is done through a port.

Let me be clear: a chemo port is a revolutionary device that has made administration of chemo drugs far easier on the patient. Not having the port would be absolutely miserable and likely necessitate breaks in treatment as the patient recovered.

Port_in_a_box
This little marvel makes chemo much easier. The dark purple circle is a soft membrane into which the needle is inserted (through the skin). The tube delivers the meds straight into a major vessel. Easy peasy!

However, it wasn’t until we were talking about setting up a port implantation appointment that I began to grasp what was actually going to happen: a small disk would be implanted onto my chest wall, just under the skin, from which a thin flexible tube would run up and over my clavicle and then down into the blood vessel (probably the superior vena cava, but I didn’t ask). Once I started infusions, the needle from the bag containing the drugs would be inserted through my skin, through a membrane on the port, and that was it for the needle prick. Simple and relatively painless.

But about that port. To me, “port placement”, as the implantation procedure was called, was surgery. And I wasn’t great at handling surgery. Usually I like a lot of info to prep me for what’s coming, but I couldn’t even handle watching a video of a placement procedure.

Port_Placed
After port placement. I was acutely aware of a foreign body poking out of me. Alien, anyone?

I don’t have a lot of fat on my chest. There was nothing to nestle the port down into, and as a result, after implantation my skin was stretched tight. I could see the lump in my chest and I could see the tube as it ran up from the lump, over the clavicle. Turning my head pulled the skin — ow! I avoided looking at it, let alone touching it. All I could think was that I had an entire year of this.

Eventually the skin stretched to accommodate the port, but because it stuck out like a little knob, I worried about twacking it. When I hit it with a dumbbell during a workout, I cried. Seatbelts were a constant concern; I was afraid that the port would get dislodged and injure me in a car accident. Hugs hurt and I instinctively turned that side away from people. And of course, in the event of a huge catastrophe that resulted in the collapse of society and all modern services including port removal procedures, I might be stuck with that thing on my chest for the rest of my pathetic little life.

Eventually, the day came when I finished my last infusion and my oncologist gave the go-ahead for port removal. That thing was out within a week. Removal was simpler than implantation, done under local anesthesia without the need for fasting, and even all the tugging to get it loose didn’t bother me. I was so happy to have it out.

But I’d carried it inside me longer than I had carried either of my children, so I asked to take the port home. While I had hated it inside me, I was so grateful for what it had done. I mean, I couldn’t just let them throw it out! It was handed to me in a bright pink box designed for dentures (apparently, keeping your port isn’t popular enough for the creation of “used port” containers) and now sits on my desk. I prefer it there rather than in my chest.