Thursday, February 19, 2015

Late Night Meanderings

My next chemo cycle begins. It will be 3 weeks on, and one week off. It is during the second cycle that hair loss is the most likely to occur.

After the last treatment, I am leery of how my mood may dip. I had had two treatments without a significant dive into the abyss, so the last time took me by surprise. I knew what was happening, but it did not stop it from happening, nor did it help me deal with it.

It is an awful place. It is like a dark, heavy, wet blanket. It is a place of not necessarily being able to sleep, and not necessarily being able to do anything else. And even if there was a capability to do something, there is a feeling of incredible lethargy, and lack of caring. Nothing matters, and nothing feels like it matters. As a matter of fact, death seems the most "likely" place to go. And, even worse, perhaps, it is even hard to care about being "there."

Many think this dark mood is a "place" that is a choice, and can be controlled. I suspect that someone who has ever truly been "there" would likely not be of that opinion.

Even as I knew what was happening, and why, I felt helpless to stop it. The feeling was so familiar. I have learned to "allow" the darkness, in the same way that one "allows" themselves to enter a tunnel on a trip. It is part of the path that takes you where you need to go.

I wish I could say that saying what I say and knowing what I know logically helps, but I am not sure that I can - at least not when I am in the midst of it.

As I share this, it occurs to me that there might be those who will be tempted to downplay, or in some way minimize, the reality of what happens, given its nature. "Oh, there she goes again." 

The last chemo treatments I wrote about "behind closed doors." The immediacy of my pain wasn't readily apparent publicly. The first time (the first 6 months) I went through treatment, I wasn't as aware of things as I am now. It was all new to me, and when I did share things there were times I was bombarded by well meaning, but extraordinarily unhelpful, advice. 

Being a "veteran" in this experience of cancer is helpful in some ways. Supposedly one becomes an expert at something after dealing with it 10,000 hours. Day 417 of dealing with this I became an expert. Ironically, Day 417 was Independence Day, 2013. 

Yup. I just had to figure it out. 

Independence Day. Ain't THAT something? Not sure what I think that means at the moment. But I will definitely be thinking about that "coincidence."

As of this moment, I have been dealing with cancer 1012 days or 2 years, 9 months, 6 days or 144 weeks and 4 days or approximately 87,436,800 secondsor  1,457,280 minutes or 24,288 hours.

Actually, I should probably amend it to say "consciously aware of" dealing with cancer for this period of time, as odds are I was unaware that I was dealing with it for several years. But the unaware years did not make me an expert. It was only in my interactions with it that I became one, twice over. 

I wonder how many would think that. I am guessing not many. Who would want to claim being that kind of expert? It isn't, after all, a type of recognition that anyone is likely to seek out, or even want.

Hmm. I just paused. Still pausing, actually. Guess I am wondering what I think of what I am saying, and I am not really sure, actually. 

I also am thinking about those "outside" of cancer. I think many of them would not see the "expert" thing, because they see everything about cancer and the person dealing with it as something to be fixed or managed.

Another hmm.

We usually seek out experts, and hold them in some sort of esteem. I think when it comes to someone dealing with cancer, there can often be anything but that, and often - depending on person and circumstance - there can even be disdain as the person who is already dealing with a lot dealing with cancer is judged, and judged harshly. This is certainly not the case in all circumstances, with all people, but likely happens too often, and more than you might realize.

I suspect it is an indirect, rather than direct, effect in that the seemingly negative reactions come from people's inability to deal with the emotions that arise when dealing with the idea of cancer. Their inability to deal with it can make the person dealing with it a target. Of course, it isn't a conscious thing,or anything anyone would ever want to admit to.

But just because we may not see something doesn't mean it doesn't exist. And there can be cases in which the thing we don't see we'd rather not see because it is just too painful to look at.

For some, people dealing with cancer become painful reminders of things that are hard to look at. Ignoring the person, and/or the illness, or its effects, is the easiest way to cope with something than less desirable to consider.

I am sure there will be some quick to argue against my assessments. Am I "right?"  Am I "wrong? " I doubt I am either, at least not in any kind of absolute sense. 

I suspect that what I have written is hard to read. I suspect it goes against any reality about cancer that anyone would want to believe is the case. Parts of it just sound pretty horrible to contemplate, don't they?

The thing is we all too often use discomfort as criteria for how we choose to interact with something - if we even choose to. And when it comes to things like cancer, there is discomfort to spare.

It is one of the reasons I say a lot of what I do. I tend to think we would all be greatly benefitted by a change of perception when it comes to cancer, and that is not likely going to happen while we are busy avoiding it.

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