[cancer] Of ports, scans and the smell of ancient oceans

One of the minor but potentially significant questions that has been raised as we head toward the end of the chemotherapy process is whether to have my chest port removed. The port is a medical device just below my right clavicle that’s tied into my carotid artery. Roughly this doodad here.

When the port was installed back in December, I went around for quite some time feeling like the surgeons had left a Bic pen in my chest. I can easily find the knot in my neck where the line ties into circulatory system. The port’s head has become slightly more obscure over time as the device has sunk deeper into my chest tissue and acquired a tilt relative to the nominal plane of my skin. It can be palpitated, and the implant scars have never healed due to the effects of chemo, so it’s not too difficult to find. As previously noted, we’ve had to alter the protocol for setting the needle, however. A one inch Huber needle is needed now, where we used to employ a 1/2 inch Huber needle, and I have to achieve a rather ridiculous pose to give optimal access to the port head. But basically, my body has adapted. The port doesn’t feel invasive anymore, and it’s composed of surgical grade material, so it can lurk in my chest for years if need be, given monthly flushing of the head so it doesn’t clot into uselessness.

The primary argument for taking it out now would be because the device was bothering me. Except it doesn’t. I may come to view monthly trips to the infusion center for a port flush as a bother, but there are countervailing advantages.

The primary argument for leaving it in is the quarterly CT scans I will be having for the indefinite future, as well as possible PET scans. The veins in my arms are a mess from these past few years, tough enough to get blood out of, but the larger gauge needles required for the contrast dye (CT) and radioactively-tagged glucose analog (PET) are holy hell to get into me successfully. The port provides a much more convenient access path.

(Which reminds me, did I ever describe the olfactory side effects of the chest port? When I’m being injected with saline, I can smell the ocean. Heparin doesn’t give me any particular scent. Some of the chemo drugs do funny things to my nose, too. I assume this is a circulatory thing, but it’s one of those minor chemo weirdnesses to which I’ve become accustomed.)

So basically, I can have day surgery to have the port taken out, and trade monthly flushes for quarterly jab fests. (The CT people call in a specialist from IV therapy when they see me these days, that’s how bad it’s gotten.) Or not.

That’s logical enough, and for now I’m sticking with the port. But there’s an emotional angle, too.

Though no one has ever formally told this in a medical or oncological context, my own perception of my cancer is that it’s unusually aggressive. Onset was two decades younger than average, and metastasis was not expected at all, given the pathology of the primary cancer. In other words, colon cancer has struck me hard twice as a significant outlier on the bell curve. Given this history, I am quite suspicious that this aggression will strike again, with another set of metastases in the next year or two. This is an emotional response, not medical advice, but it’s still very real for me. A somewhat subtle and sophisticated form of ongoing cancer fear.

It seems ludicrous to me to go to the trouble of having the port removed, only to have to put it back in six months or a year later pursuant to a subsequent round of chemotherapy. I know this is my heart talking, not my head, but I do have to think forward, and given my history, being slammed with more unusual medical crap would not exactly be a shock.

So I believe I’ll be leaving the port in, hoping for the best, but preparing for the worst. Living through this, one passage at a time.

7 thoughts on “[cancer] Of ports, scans and the smell of ancient oceans

  1. pelican says:

    It’s always good to plan for the worst and to be able to enjoy the pleasant surprise of being wrong.

    Once your veins are gone, they’re gone, so you’re right- your CT and PET scans are going to be unpleasant sans port.

    You and yours seem to be a very resourceful and talented group of folks … perhaps it would be possible to either have an in-home nurse do the monthly flush, or learn how to do it yourselves, at least every other month?

    Thanks, as always, for sharing your experience with the world. I’m grateful.

    1. Jay says:

      I think the issue on the flush is the process of setting the needle. We can manage the needle in place, and handle the extraction. I doubt they’d let me do that on a home basis, except under medical supervision.

  2. Kathryn says:

    I’ll be having a port put in about the middle of July. I’m not looking forward to it, but then again there is nothing about cancer that is worth looking forward to except chemo ending.

  3. Amy Thomson says:

    Jay,

    Post-cancer fears of recurrence are normal and reasonable, though not pleasant. Even with Cancer Lite (kidney cancer entirely contained within the kidney and NO chemo) I spent years waiting for the thing to come back. That was 1992, and it was a good 5-6 years before I felt out of the shadow of it. I hope that your cancer is gone for good!

  4. Pam says:

    With your veins, I think you’re making the right decision. I hope to be glancing through your blog, some day a few years from now, reading that you’ve finally decided it’s time for it to go, since the cancer isn’t coming back.

    I had a port 5 years ago. I never didn’t notice it. I hated it. The removal surgery was done in the surgeon’s office — much less bother than putting it in. One of the nurses and I talked about knitting while it was taken out.

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