Port procedure/surgery

After seven (7) years of mostly behaving itself, my original port has been removed and I am the proud owner of a new power port! This may seem like a little thing, but it has been a challenge for years dealing with my first non-power port and having a port that can handle contrast without a lot of negotiating and adjustments is a bit exciting. Yes, we cancer patients often get excited about things like this!

But.

And there is always a but …

While I am thankful and a bit excited to try out the new hardware in my body, there were some hiccups with the process that made it needlessly stressful. Yes, everything did work out in the end and this is what others keep reminding me; at the same time, the stress of the last week or so is something that could have easily been avoided. And I feel like this is a topic that rears an ugly head quite often — I wish I could say otherwise, but I am starting to believe that we patients and our trust and comfort will never be true priorities.

Here’s what happened:

First, I had the discussion with my medical oncologist during an appointment about my most recent PET scan about replacing my port, on a Monday. While I’ve had lots of issues with my port over the past two years, this was the first time that the sheath that had been forming was visible on the PET (or at least was mentioned). We agreed that it made sense to do a port study/check and to replace it if necessary. Having experienced a few procedures, I didn’t ask detailed questions during our brief appointment together since I knew my medical oncologist wouldn’t be the one performing the check or replacement, but we realize that we should have asked more process questions to set expectations.

Second, before I had a chance to figure out how to contact the Interventional Radiology (IR) department the next morning (Tuesday), I received a text message scheduling me for a port replacement the following week, which happened to be during Thanksgiving break when my kiddos are out of school. Since this wasn’t what I’d discussed with my medical oncologist (meaning we’d do the study and then potentially replace), I immediately called. As with so many unilaterally scheduled appointments, there was no call to coordinate, no one asked me what my preference was, no one checked to see if I could show up for said procedure, no one told me what blood counts I might need to watch or which port was in stock (just a few of the items ping ponging around in my brain) or any of the other questions on my list. I’ve seen the all caps bolded language on the first page of my patient record saying not to schedule anything without calling me, but they keep doing it when it is expedient for them, never mind the stress and anxiety and difficulty it is for patients.

Third, after that text message, I called and talked to a variety people in the scheduling department, breast clinic and within the IR department. I also sent a few questions within my patient portal. Every time I asked a question (e.g., what kind of anesthesia will be used), I was given general info and then referred elsewhere. It was eventually explained to me that the IR doctors are super busy and a port replacement/placement/check is so routine that they delegate the patient contact/consult before the day of the procedure to the ordering doctor. In my circumstance, that was my medical oncologist and her staff, who kept sending me back to the IR department.

Fourth, when we arrived for the procedure, we did have sufficient time to discuss my questions and the outcome was what I wanted, that I have a new power port. I met the entire team in pre-op and my husband was able to be there with me. There were a variety of issues that should have been ironed out before the appointment versus hoping that it could go forward and I did vomit all the way home (over 2 hours away). I discovered that much of the information that had been shared with me prior to the surgery was either just completely wrong or had more nuance than was explained; I was able to get the name and model number of the ports they have in stock to ensure that it wasn’t subject to a class action lawsuit or a recall, so I’ll call that a small win.

Fifth, alls well that ends well? This is what my team and others are urging me to think about, that I was successful in getting what I needed despite the stress that the entire process caused. I am happy to have a power port and I am thankful that the procedure went off without a hitch; at the same time, I’ve lost sleep, I had to medicate myself pretty significantly so that I could interact without spewing my anxiety on everyone, literally drove to multiple locations to get medical records, etc.; we had to go to the procedure understanding that it just might not happen. And don’t get me started on the assumption that patients just trust whoever is doing the procedures without any or minimal effort to develop rapport and trust.

If you google process versus outcome, a variety of articles come up including a quote often attributable to Bruce Lee, that “the process is everything, the outcome is nothing.” I’m not suggesting that the outcome of medical treatment isn’t important, what I am struggling with is how broken and confusing and disrespectful the process is most of the time. So, today I am ambivalent. I have such mixed feelings and contradictory thoughts and for now, I’m going to sit with the feelings and mourn. Grief is so mixed in with the anxiety and feeling dismissed and relegated to the bottom of the list in terms of importance. The life of a forever patient simply isn’t a cakewalk.