11/30/2017 Port placement and tricks of the mind

No need to wait for AI, I can officially be plugged into today!

I’m obviously joking (kind of) about the ability to plug into me, but more on that in a moment. See, I've always been a "hard stick" when it comes to nurses and technicians finding a vein to draw blood, set-up an IV, or anything else. It's almost like a physical manifestation of my dislike of being vulnerable in any way. While being a hard stick hasn't mattered for most of my life, it is suddenly a really important detail. Chemo can be delivered several different ways, but the most common is of course intravenously. And of course, because cancer doesn't suck enough already, chemo can impact your veins over time, making it even more difficult for nurses and technicians to find them. I've never been afraid of needles, but in the last couple of weeks, I'll admit to a steadily growing disdain of all things pointy.

Thankfully, I'm going through this experience at a moment when there's a seemingly simple option available - a port. A port is a small disc made of plastic that is placed just under the skin. It's usually placed on the opposite side of where the cancer is (so, in my case, on the left side) somewhere just below the collarbone. A catheter is then used to connect the port to a large vein. In my case, I believe they inserted it via one of the jugular veins. The port is placed (I like to say implanted, but my sister, the physician, says I'm not a machine) via an outpatient surgery, which I had Thursday, November 30th. The surgeon makes two small incisions - one under the collarbone to place the port and another on the neck to insert the catheter into my vein.

While reading up about ports and the experiences of other cancer patients with ports, I was pleasantly surprised by the enthusiasm most patients showed for it. Some people have even nicknamed their ports, they love it that much! I figure anything that inspires that much passion in cancer patients must be a damn good solution. See, don't I look pretty excited for my port placement surgery in this picture?

Once the port is in place, a qualified nurse can insert a special needle ("plug" into me as I say) each time I go in for chemo so that my chemo can be given via the port instead of a new IV. While I knew that I would be in for a lot of needles when this process started, I didn't realize quite how many would be poked into me along the way. You see, each time I go in for chemo, which will be once a week for the first three months, I also have to get poked for a blood draw a minimum of 1.5 hours in advance of my chemo infusion so they can check on how I'm doing. If anything is out of sync (e.g., white blood cell counts are too low), then we may need to adjust course for that week or even cancel chemo for the week.

You can imagine my excitement at the idea that my port could also be used to draw blood (saving me from both the blood draw and chemo IV needles each week). Unfortunately, while blood can be drawn from a port, the needle must be placed by a qualified nurse, which may not always be possible and/or may add on too much time.

Overall, the port placement surgery seems to have gone well with some soreness/dull pain the next day. For now, we're just going to ignore the fact that I wasn't allowed to shower for 48 hours after or that I can't lift anything weighing more than 20 pounds (~9 kilos) for 3 weeks or that I can't drive for the next 2 weeks. Sadly I'm discovering that I'm horribly ill-suited to my childhood dreams of being a princess who is waited on hand and foot. The whole process is tedious and makes me testy (what doesn't these days?). I do suppose though that I will have to get used to the idea, at least for a little bit. Regaining (ideally) my full independence will hopefully give me something positive to work towards in the months to come.

Tricks of the mind

Keeping my spirits up isn't always easy. In some sense, I always feel like I'm waiting for the other shoe to drop. It sounds odd, right? I've already discovered that I have cancer, an aggressive one at that too, and yet I'm still waiting for something else. Some of this is driven based off of a group of IBC patients I'm connected with. Having access to this group is a double-edged sword. On one hand, they're an incomparable source of information considering their first hand experiences, and a group that's willing to answer any question out there or let you express any emotion that you might be feeling. But on the other hand, I'm getting multiple daily reminders of just how difficult a battle I have in front of me with news of recurrences, metastasizes immediately after finishing the first round of full treatments (chemo, surgery and radiation), the innumerable side effects of these treatments, and unfortunately, death.

I also know that sooner or later, I will start to feel the effects of chemo. I was fortunate enough to have a smooth experience during my first infusion, but the effects can appear several days later. When your own body seems to have turned against itself, every itch and every twinge makes you suspicious. The list of potential side effects for each drug is long and overlapping too. The pictures below show you the list of side effects that I've been informed about for each chemo drug (and I promise, each picture is of a different page!). These side effects listed don't include those that might occur as a result of premeds (e.g., steroids to manage severe side effects) or medications provided to manage other factors (e.g,. pain meds for the surgery or an injection I'm receiving to stop my periods, and others).

Sidebar: I've always been a forgetful person, but these last couple of weeks, I've actually been concerned about just how much I struggle to remember things or can't seem to find my words when I'm speaking. Looking through these pictures as a proxy for how much I've had to learn and absorb, I'm suddenly inclined to give myself a pass. If I happen to have, by chance, forgotten something important related to you, my reader, I'm afraid I'm unlikely to remember. I live by reminders on my calendar. Do us both a favor and send me a text to tell me to set a reminder on my calendar for anything important!

I'm saying all of the above as a way to get to a point about just how powerful a tool the mind is. While I "know" this as we all know it, I am realizing that the mind, my mind, will be both my greatest tool but also my downfall. When I notice symptoms like itchy skin, random bone pain, a bit of nausea, and others, my curious mind wants answers. But those answers are incomplete, likely wrong and do little to help me in the end. Getting stuck in that wormhole can and has seriously demotivated me. So instead, I aim to distract myself with a) reading, whether it be articles, blogs, or books, b) online classes and c) TV shows and movies. I'll sometimes share a link or review with you at the end of a post. Feel free to leave me links in the comments to anything you think I might enjoy!

I'll end this post with the first link I'd like to share:

https://medium.com/the-polymath-project/the-paradox-of-belonging-81aba4a2c29e