Disconnected. Slog. Resentful.

This October I feel more disconnected than ever from the Pink noise. And yet, I feel more burning resentment than ever, too.

Before I got online this morning and saw all the posts about submitting 3 words to GMA for some Pink crap they are doing, I was already thinking about how the words and phrases about to fill all media are so damn meaningless (just like I thought this last year: Some Word Problems). I saw silly grocery bag (pictured below) with the ribbon and the words “inspire hope”, and all I could think was, “what does that even mean?” I snapped this picture while I was waiting in the checkout line, and naturally my gaze fell onto the People magazine with Jackie Collins on the cover—barf (I am sorry she died, but completely disagree with her views and am so jaded about ALL celebrity cancer stories that I just always want to barf when I hear of them).

What do these words mean? What have they to do with my every day slog?
What do these words mean? What have they to do with my every day slog?

I am so tired of all the slogans surrounding cancer, and even all illnesses. They are so disconnected with the everyday slog that is the very nuts and bolts of treatment. This is why I’ve been especially touchy this year about the showy symbolic activities, such as wearing a bald cap, for “support”. How does this bald cap, or taking off a bra, and then maybe hanging it on a mailbox, do anything for that every day, minute to minute, nitty gritty, SHIT that is treatment?

I don’t write often about my primary client; I take care not only of her pets (since, technically I am a pet sitter), but also I am a secondary caregiver (her husband is the primary) for her Chronic Lyme treatment. First of all, hers is not my story to tell exactly, and secondly, there is so much controversy surrounding Lyme and I am unwilling to wade into it. Chronic Lyme patients will read this and know the everyday slog of which I speak: the IV treatment regime, the schedules, the horrific side effects. Cancer patients will know some of it, and can take an educated guess about the rest.

This is only the tip of the iceberg in describing my daily life. I won’t go into the scary dark places: the reminders of my own experience as the receiver of caregiving, the horribleness of side effects. Just know that the past few months have been especially difficult. I’ve been super busy and often so tired when I finally sit down to my laptop that I can barely read the many posts by my favorite bloggers (my saved links on Facebook and bookmarked web pages to read later “when I have a minute” are now out of control).

When I see “inspiring” slogans on t-shirts and what-not, and smiling crowds in races or on idiot morning TV shows, with those little clips detailing the same old story, I just think—is this the real life? No, it is not.

Patients face disease and treatment alone, ultimately. Yes, good people do lend real support—not the fake, symbolic kind exhibited by head shaving, but real stuff like listening, holding, cooking, cleaning, etc. But no one can experience the nausea, the constipation, the diarrhea, the exhaustion, the FEAR, and so on, for the patient. And people holding up signs in a video clip don’t help me when I have a relapse of cancer panic, or when I nervously, fearfully, watch my client to make sure she stays awake long enough to not choke on her food.

THAT is my everyday slog. How can I help but feel resentment when I see all this we-are-fam-i-ly sign-holding, waving, smiling, on TV? I did not go into warrior mode and kick cancer’s ass while I was in treatment. I slogged it out taking each day as it came. I do the same now. Lyme’s ass is not being kicked; we’re just taking one day at a time, slogging it out, doing the best we can and working toward better days. Cheering crowds make me feel so disconnected with the realities of illness and treatment.

That is what illness, cancer and Lyme, are to me: a SLOG. And the celebrations about to ramp up for Pinktober make me feel DISCONNECTED and RESENTFUL.

And those are my 3 words—but they won’t be the last words I speak.

Advertisements

Agitated

I want to write a thoughtful post about all that is happening with my current issues, but I am unable to do so right now. In a nutshell, I have “some kind of cystitis” that is causing a high, almost unmanageable urge to urinate, VERY frequently. This has been going on for over two months and I’ve been bouncing around with the doctors, and dealing with scanxiety (see past few posts). A frightening episode with ultrasounds of my kidneys and bladder yielded “good” results. As in, no tumors (yay), and everything seems normal (not abnormally retaining urine). That’s great, except I still have a problem, and it seems undefinable, at least according to these imaging results. I’ve been informed that these “good” test results do not necessarily mean I do NOT have cystitis.

In the meantime, while going through the tests and waiting for results, of course pharmaceuticals were prescribed. Of course insurance would not approve the doctor’s first choice, and I’ve been forced to jump through hoops. Nothing new, that happened a bit during cancer treatment. But the drug that was finally approved came with dreadful side effects. I have been suffering from these for the past week and it has been as bad as the effects of chemo, maybe because I did not expect them to be so drastic. Dizziness, blurred vision, heart racing (although that one is not listed), weakness…the list goes on. The one that “got” me though, was: agitation.

Yes, I’ve been very agitated, which is why I’m late in getting this post out, and why it took some time for me to respond to comments on recent posts. I was too weak/fatigued to spend energy on anything but working. And I still do not trust myself to communicate in a level-headed way, even now.

Let me put it this way, the side effects were so extreme, I was sure cancer had returned, everywhere in my body. Despite an all clear MRI two months ago, I’ve been convinced that a giant tumor is lurking in my breast, under the scar. I’m convinced cancer has spread to my brain. I’m a bit calmer now that I understand that I’m agitated because of the drug, but I’m still a little “off the rails” even now. I was on the drug for a week, and I ceased taking it a few days ago—a choice I made even before I understood all these side effects—I stopped taking it to rule out the drug as a cause of what was happening to me. I’m glad I had the presence of mind to do that, and looking back at how bad the beginning of this week was, it is amazing I did have that presence of mind.

I’m still not “right”. I still have upcoming doctor’s appointments….and the original problem of urgency and frequency has returned. My frustration level right now is VERY high. So I’ll stop this post here, because I can tell, even just writing this, that my mind is still not right. I only wanted to let everyone know, given the fears I’ve written in recent posts, that at the moment, they seem unfounded.

But my problems are still not solved, so my quest continues.