Necessary Rage

I took my first chemotherapy on Friday, which went as well as possible. For those following along, I will have five or six (depending on my tolerance) conventional chemotherapy treatments – meaning I will go bald, potentially barf constantly ( so far so good on that front ), my bones will ache from head to toe; I may have diarrehea or be constipated; I might lose all my nails; my blood counts will drop further with every treatment, I will have neuropathy in my extremities, and apparently, my spleen might explode. That last one is a new one for me, but it’s ok, I’ve learned to recognize the warning signs.

Once I finish this carnival ride, I will take a four week break, followed by a bilateral mastectomy (the jury is still out on whether to reconstruct or stay flat). Then I will take six more rounds of targeted chemotherapy which is all the cancer fighting power but almost none of the carnival show side effects. Finally, I will take an oral hormone suppressant for either five or ten more years depending on how dried up my hormones are when we finish. Every time this feels overwhelming (roughly every 30 minutes) I remind myself they expect me to be alive to take a pill for ten more years, and then I shut the hell up complaining about that part, at least.

But back to Friday.

Friday, I was not a pleasant person. Well, most of last week I was not a pleasant person. Craig joked about keeping a list of my grievances against the entire process, the experience and the universe as a whole, but honestly, by the end of chemo day even I felt a little bad about my attitude. What was coming out of me was at least as poisonous as what was going into me, a sort of karmic homeostasis, I guess. He, of course, knew at least half the people there, made some new friends and was gracious and kind to every single person we encountered, and he took care of me and sat in a chair even more uncomfortable than my own for almost six hours. Fortunately, when tubes are coming out of your chest and poison is going into it, people are a bit distracted if your manners are somewhat lacking, plus I had a handsome and charming companion to distract from my cloud of bitchiness.

Long story short, it probably couldn’t have gone one bit better than it did, and it was still one of the most hellish nightmarescape days of my life, and I’m not done being angry that I have to do this again, not by a long shot. But I may try to stop leaking it all over everyone. We’ll see. It’s being considered.

Generally, I tried to block out most of what was going on around me throughout the day. The daytime TV piped throughout the room was abysmally vapid. The chair was uncomfortable after the first 3 hours. I just wanted to go home, and so I sunk into myself and Netflix and simply willed the IV bags to drip faster.

About mid-way through the process, I emerged from my personal misery when a gentleman entered the treatment area. He was gaunt and jaundiced, unable to walk unassisted. There was a great deal of activity around him, none of it encouraging. I kept my eyes on my screen and tried to afford him both privacy and dignity, while trying to afford myself deniability that this is what cancer looks likes too. I didn’t hear much of what was happening except for a moment when the universe seemed to pause briefly, and what I heard from the outside my self-protective bubble was, I’m not ready to give up yet, Doc.

Honestly, I’ll probably hold that moment forever and not know what to do with it entirely. I only know it could be me, but right now it isn’t me, and oh god wherever you are please give that man his heart’s desire if you have any heart at all.

I’ve had a million conversations with my daughters over the past few weeks. We’re all trying to make sense of what this means for me and for us, and we’re all constantly reaching out to each other, as though to assure ourselves that everyone is still here, that everything is wrong but it’s still mostly alright. We’re kind of a touchy, feely bunch, physically and emotionally. During one of these conversations I remember saying that I made some huge gambles for the life I wanted the last time I was in the arena with cancer. I turned treaments down and made decisions way out medical bounds because I knew the kind of life I wanted to have if I got to choose.

The life I wanted is exactly the life I’ve lived. In fact, my life has far surpassed anything I dreamed of when I did this the first time. I’m beginning to realize is what a rare gift it is to say this.

And maybe that’s a little piece of my rage as well, because this bullshit was never part of the plan. I mean, it’s the bad luck of the draw to have cancer once. You make your peace with it because sometimes shit happens, and that’s an unavoidable fact. But twice? When I see the juxtaposition of this great big marvelous life I’ve received but which currently feels just out of reach of my IV tube – that’s where my rage kicks in. We’re just getting started, goddammit! No less so now than twenty-three years ago.

The space in between my two realities is where my rage sits, and despite all the good christian teaching I received about not letting the sun go down on my anger, I’m pretty fucking angry. I may believe that bitterness is toxic, but I also think anger can sharpen us and strengthen us and make us able to stand in the face of monsters and yell, BACK THE FUCK UP! I’m not ready to give up yet!

So I’ll keep my rage, thank you very much. I’ll keep shaking my fist and dropping F-bombs and in a few weeks I am not going to be at all happy about sitting in that chair again. I won’t be anyone’s chicken soup for the soul in this mess, that’s not my job. My job is to live and I intend to knock that shit out of the park.

But I will also try and remember to hold space to receive and give the gentle kindnesses of those who truly intend for me to be complaining about still taking medecine in ten years. That list of grievances should be pretty long by then, I’ll bring extra pens.