Just as soon as my mom’s husband was here, he was gone back to Florida. He’d done everything he could for me here, and lifted my moms spirits no doubt but we couldn’t smash us three plus the occasional pair of kids in my 850 square foot cottage forever. 

Every week is a new adventure in my life ever since I was very first seen about the lump on my neck, and I’d thought that would slow down with recovery and every day would start to blend together into more of a groundhog day where the only noticeable difference is I regain some function or capability, or at least a portion of it progressively.  That’s still happening in a sense, but the world keeps spinning whether I’m trying to spin with it or not, and I don’t live in a bubble.

This was the first week I allowed the infusion clinic to keep my chest port accessed throughout the week, versus the usual procedure of getting it accessed and de-accessed daily. What this means is I let them keep the needle inside the port with a small tube hanging out, kept on and secured by some adhesive strips and squares. I kept it accessed Monday through Friday, since my hydration appointments are daily, and it was overall less painful for me and easier for the nurses at the infusion clinic. I took a shower with it on, which was a little nerve-inducing, but nothing went haywire.

For the uninitiated, having a port in your chest basically means I have a small plastic hose that runs from a vein near my heart to a type of, well, port that is just underneath your skin. Back in mid-February when I had it put in it was barely perceptible, at a glance, aside from the slight bruising and discoloration, and now that I’ve lost 35 pounds it protrudes fairly noticeably when I take my shirt off.  The purpose of the port is to have an easy access point pre-drilled into your circulatory system for things like chemo, which takes hours of being hooked up to an IV, scheduled hydration, and hospitalization. Instead of slipping a line into your arm, they can take a special port needle and tap right into your system from your upper chest.

Like I said above, no two weeks are the same anymore, but I do find myself settling into a mental lull as I grind through this period of “recovery.”  The damning thing is that I don’t even know if I’m in recovery from cancer, recovery from treatment, or both. I’m definitely in recovery from treatment, that much is obvious even with the painstakingly slow rate in which that’s being achieved, but I don’t know if I’m cancer free yet and that hangs over me like barely-perceptible anvil head clouds somewhere on the horizon. Is it there? Is it going to hit me? Will it swing away? Is it even there at all?

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My speech had really started to normalize during week four of recovery. I no longer really felt the need to hold back, keep my mouth artificially closed, or avoid certain tones. This was important for me to sound more like myself again, but maintaining conversations over a sustained period of time is difficult because of my dry mouth. It will take up to a year or longer for me to regain most of my salivary glad capabilities, which means I run out of steam quickly when having “long form” conversations, and I worry tremendously for what this means when I am able to begin exercising again. Water brings temporary relief, but I still have to self-regulate in this regard. Keeping my mouth shut, not exerting myself for a few minutes at a time, and trying to use medicated aids are the only real allies in that small battle in this larger war.

The idea that I’m “exerting myself” brings a grin to my face even as I type it. I have basically no muscle mass left. During week four the most I could do was walk from the car into the hospital and to whatever clinic I was heading to at the beginning, but by Sunday evening I was able to mow my entire front and back lawn. Now, this is basically just walking the same distance as I would be from parking lots into hospitals and clinics, but outdoors and pushing a small electric motor- no small feat when you consider where I was a month ago. The downside to doing an activity like this however, is I’m completely worthless the rest of the day. Anything other than “sit in the recliner and rest” exacts a massive toll. What was, pre-cancer, an embarrassment of riches when it came to stamina, is now a near-bankruptcy. My body lives paycheck to paycheck when it comes to energy levels. Any time I challenge it I have to pay in back ten times over.

Another wrinkle of this recovery period, however, is the inability to rest how I need. My ability to sleep has taken a hit. I can be incredibly tired, physically, mentally, emotionally, and even medications I’ve been taking that are known to help induce sleep do not even make a dent. About half the week, despite being completely exhausted, I was only able to get a few hours of restful sleep. This is not what progress looks like to me, but unless it continues I’ll chalk it up to a small bit of choppy water hitting the boat.

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You’ll notice that this blog is being cut loose on a Friday of what would be “week 5” of recovery. This is obviously part of a pattern where the entries are slipping further and further “off schedule” of zero to three days after the preceding week I’ve been trying to keep for the core group of family and friends that manage to work their way through this blog to stay updated on my health. I have a lot to say, believe me, about this process and the health and non-health related wrinkles during this adventure, but I don’t think I will be attempting to remain “on schedule” anymore. I will still be making regular entries, but they won’t be driven as a weekly update format, but more event or need/news based update. There’s apparently the ability to subscribe to updates via email, if you aren’t keen on checking my FB/IG story to see when these float in.

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The views and opinions presented herein are those of the author and do not necessarily represent the views of the Department of Defense or the U.S. Army.