Another month in the books, and not a bad one either. I am starting to run low on stickers for the days I accomplish a thing, but now that I’m going on shopping excursions with Dan to our local Meijer, I can pick some new ones out.

I’m proud of my FitDesk time and mileage. But with the improved weather in May, I’m hoping to log a larger variety of activities–especially ones outdoors.

And now to get cracking on Brain Tumor Awareness Month.

So I think I’m finally in a decent mental space to talk about my medical future. The thought of Brenda* doesnt get me miffed anymore, and lots of people are asking me “what’s next?”

As I mentioned earlier, I’m done with treatments. But did they work? And will there be more?

I’d say they worked, but it all depends on what your goal was. My goal was to be any kind of better than I used to be. And I can put my underwear on by myself again now, so … HUGE plus.

I knew from day 2 or 3 after diagnosis that removing the tumor was not an option. But in October my MRI revealed that the tumor had shrunk. That was a pleasant surprise, celebrated with dinner at Applebee’s.

Because my tumor is on the brain stem, the doctors said it was too dangerous to cut out. That left radiation and chemo therapy only. I’ve done one five-and-a-half week round of radiation with Temodar. And then six additional rounds of Gleostine.

Will there be more of either in my future? No idea. Can there be more in my future? I don’t honestly know. I’ve heard different things at various times about how a recurrence of cancer growth might be handled down the road and there are too many variables for me to know what’s likely to happen.

I haven’t asked my doctors any what-if questions either. It’s just not my style. I never asked them the life expectancy question. I never asked them what symptoms they assume I will have forever. Or what I might recover from. Basically because I know that all they can do is guess. And my long, tiresome medical journey to this point has taught me one thing:

I ain’t getting my panties all up in a wad over anyone’s best guess.

If I wake up tomorrow with normal nerve sensation in my left side, sweet! If I am suddenly cured of vertigo and nystagmus, w00t! If I don’t, oh well. I’ve already seen tons of effed-up days. What’s one more?

I’m not well enough to work right now, due to continued fatigue, brain fog, dizziness, and a handful of other symptoms. Do I want to work? Let me put it this way: I want to be well enough to work. I do not want to work until then. I slogged through several years of pain and misery with this tumor, and the thought of being forced back to work before I am ready sends my anxiety into uncharted territory.

So for now, I’m working on self-managed PT. Riding the FitDesk daily. Doing strength exercises. Contemplating whether we can physically manage and financially afford getting me to some PT/OT soon-ish.

The best part about where I am right now is that I’m not staring down a next dose of chemo. That alone does wonders for my body and my mental health.

Chances are if you’re friends with me on Facebook, you saw some drama go down on my page this weekend.

It started with me posting a few updates about my husband being denied the meds he needs. That post led to a woman telling me to “shut it.”

It was her opinion that because I wasn’t working, I had no justification for lamenting our situation (which is that I have brain cancer and my caregiver has a chronic illness that is going untreated, not because the condition is untreatable, but because our insurance–Medicaid–claims there is “insufficient medical necessity” for the medicine prescribed by his doctor).

That he doesn’t need the Humira for his psoriatic arthritis is an outright lie, however. Just look at this. Look. At. It.

Anyway, in discussing that we have been on Medicaid and SSDI openly online, countless trolls and bots have suggested, like this woman, that patients like me don’t deserve the health care we do get and have no right to complain about the health care we don’t get.

‘Mer’ka. Yeah!

This weekend was the first time, though, that someone I knew had told me that I specifically am unworthy of care or of demanding a certain standard of coverage for my husband.

***

At first I was seething with rage. Today that rage has given way to hurt and a complete disillusionment in all of humanity.

I spent two hours at the hospital getting IV fluids this afternoon. Alone with my thoughts for all of that time, I just kept wondering how many other people thought I shouldn’t be allowed to have the infusion. It was a depressing couple of hours for sure, and I haven’t yet completely pulled myself out of the funk. (I will in my own time, don’t worry.)

I used to think that people who cried “freeloader!” just couldn’t empathize with a nameless, faceless group of people they’d been told to hate. That if they knew someone who was sick, they would change their tune. Step up and demand humanity from their family, friends, neighbors, and political representatives.

Good night was I ever wrong.

***

When a friend of mine suggested I come up with something nice to say about this woman to help me shake off the dust and dirt, all I could think of was this:

“Well, if you’re looking for a friend who doesn’t coddle you with positivity just because you have brain cancer, Brenda’s* definitely your gal.”

I just want to say that everyone deserves good, affordable health care. Even Brenda. And words can’t express how begrudgingly I say that.

* Not her real name.