Quarantine Chronicles

Oh, we’re so disarming, darling, everything we did believe
Is diving, diving, diving, diving off the balcony
Tired and wired, we ruin too easy
Sleep in our clothes and wait for winter to leave

Hold ourselves together
With our arms around the stereo for hours
La, la, la, la, la, la, la, la
While it sings to itself or whatever it does
When it sings to itself of its long lost loves
I’m getting tied, I’m forgetting why

Tired and wired, we ruin too easy
Sleep in our clothes and wait for winter to leave
And I’ll be with you, behind the couch
When they come on a different day, just like this one

We’ll stay inside till somebody finds us
Do whatever the TV tells us
Stay inside our rosy-minded fuzz for days

The National, “Apartment Story”

If you’ve noticed that my blog postings have been more spaced out recently, there is a reason for that.

You have probably already gleaned by now that I don’t tend to preen and edit these posts tirelessly before hitting the “post” button. In fact, most of my blog posts are hammered out in a single session that leave me nothing more than a blubbering mess. I am okay with doing it this way. When I began, I declared this blog to be my “public therapy.” Pounding out these posts, as I do, keeps things raw, but also leaves them prone to roughness and small errors (which I, admittedly do go back and polish a bit when I re-read them in the days after posting). While that isn’t very professional, this blog has never been professional. It’s instead deeply, deeply personal.

The emotional toll that these posts take on me leads to the desire to write them in privacy- something that has been a rare commodity with the husband and kids now hunkered up with me 24/7. Nothing is more awkward than one of my kids walking by while I am sloppy crying and typing and coming over to ask, “Mommy, what’s wrong?” forcing me to come up with some lame excuse. My solution to this has been to just avoid writing altogether.

Side Note: Yes, my kids do know that I have a blog. No, they don’t read it. They don’t want to and I don’t want them to, so I guess that it’s mutual. For right now, I want my girls to stress only about the types of things that middle school girls usually stress about- friendship drama, schoolwork, etc. My son is more existential (yes, he’s a lot like his momma). I can tell that he thinks about what is happening to me quite a bit. Although we try not to hide anything from the kids, my son especially isn’t emotionally ready for the raw language in this blog quite yet. There will be plenty of time for my kids to visit this later if they choose to.

Having family around constantly has led to another type of avoidance altogether; one which is also contributing to my reluctance to write. Avoidance of THE SAD AND SCARED FEELINGS. This could be construed as unhealthy, but it isn’t as bad as it might first seem. It’s just that these days I have been wrapped in a warm, safe, cocoon that is buffering me from them. Creature comforts and love saturate me. In our family, we do not shy away at all from physical contact and snuggling. Because of this, I realize that in many ways I am actually feeling less isolated under quarantine than I have been in a very long time. Right now, with regard to my health, I am swimming without a bottom. My family has given me something safe to hold onto.

Of course, I still know that I am not safe. Periodically, that realization punctures through and breaks down the fluff until I break down. But those moments have been much fewer and further between.

In my post, “Que Sera Sera” I discussed the concept of letting go of expectations and control, and how it’s the hardest thing that I’ve ever had to learn how to do. It’s been a long search, but I think that I’ve finally located the crack to allow these concepts to seep in. I am finally letting go of expectations that will only lead to more suffering down the line.

I am now two treatments in to my clinical trial, with my first scans in about 2-3 weeks. I know that there is only a small chance of success. I know that there is a very high likelihood that my next scans will show progression. I am expecting nothing better. In so doing, I am hoping to avoid another wave of crashing grief when those things inevitably happen. Adding fuel to this is that I’ve had two more infections in the past 6 weeks (UTIs that have been difficult to avoid ever since my right ureter got blocked by my pelvic tumor, leaving some permanent compression in its wake). This means antibiotics. Some studies have shown that immunotherapy drugs such as the ones I am now taking are a lot less effective with antibiotic use, thereby lessening the chances even more that this treatment will work. I could scream and bemoan my bad luck, yet again- but what would be the point? It is, what it is, and I can’t control that. And the results on my next scan as a result of it? Well those will be what they will be as well.

Lately I’m focusing more on the good things, which I have now come to consider to be bonuses. It’s a huge bonus that my trial is still going at all with so many of them now being cancelled across the country. I think back and realize that had I not gone for a second opinion when I did, I would have continued with my prior line of chemo under the assumption of stability and would only JUST NOW be figuring out that I had progression. And with the situation what it is right now with COVID, probably would no longer be eligible for acceptance into any clinical trials.

I also consider it to be a bonus that I’ve so far avoided COVID-19, despite traveling across state lines every week or two and staying a night in a hotel each time to participate. And the side effects from the trial drugs themselves? Minimal. So far, after two infusions the side effects are much reduced from what I usually have during chemo. Instead of grieving over the loss of social outings, like the cancelling of the National’s Homecoming Festival (which I had REALLY been looking forward to, with my favorite band- who I probably not live to see live again- headlining both nights) I am focusing on the gift of being in good health and being surrounded by my family during these precious months.

In summary? I’ve learned that when expectations fly away all that remains is gratitude for the things you have and are given. In literary terms, I believe this means that we are finally reaching the arc of my story; or that moment when the protagonist finally learns her lesson, thereby undergoing transformation. Not a lesson given, but instead sought out on its own.

All of my prior beliefs that all things can be controlled, or that “doing things right” means that you will achieve certain outcomes have been tossed off the balcony, and they are now in free-fall beneath my feet. If you are looking, you can find me behind the couch singing along with my arms around the stereo- until the denouement finally comes along to find me.

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