Hope and Starlight

I hate visitors at the hospital.

I know people mean well, but there is this awkwardness as people try to figure out a comfortable place to sit and I lay there like a living corpse, turning my head to show that I am happy that they have come to visit.

Then there is the “talk” – which basically comes in two flavors, where they ask me questions that make me wish my doctors were so concerned (the doctors in Bangladesh are…fucking shitty, but that’s a different blog post) or the other type of conversation…the inane small talk as I can hear the clock in their heads count down to when they have done enough visiting.

My mom tells me that they are being kind, which, yeah, I know, but really, I am okay with no one visiting – it might have to do with me being used to being alone most of my life (mentally, I of course have wonderful friends, but I have a solitary, selfish headspace).

I don’t want to deal with the awkward pauses and uhmms and ahhhs as people try and figure out what to say as I pray that I don’t crap myself in front of them. I don’t like seeing my mother trying to pretend that they are guests in our home and be congenial (we are at a hospital, my white blood count is through the floor, I really shouldn’t be exposed to anyone, so yeah, you not being here would be better actually) to them when in fact she just wants to sit and pray and hope that I don’t collapse again.

The worst question is when they ask, “are you getting better?”

That manic, wild look of hope in their eyes, it’s kind of frightening. I have to get better, ’cause if I don’t, then if they ever get sick, they don’t have a hope of surviving it. I don’t want to be your beacon of hope, I just want to get through my day, unannoyed, and somewhat functional.

I sometimes find myself comparing myself (’cause I got a literary mind, I like writing stories, even if it is about myself) to starlight. Alone, in the darkness, shining, just for myself (exoplanets be damned).

I am not your hope, I am your starlight – I don’t guide you, you just have to follow after and figure out the path on your own…



It’s All About Prep Work

I kept putting off updating the blog, mainly because been depressed lately.

It’s hard to keep being depressed, especially when things were on the up and up for the most part – I had started a job, I was socializing (okay that was hellish…so was the job too ’cause my schedule sucked, but what the hell, I am freakishly powerful so it didn’t matter that much…well, except for the fact that the job itself was terrible, but the state of teaching and students in Bangladesh these days is a whole different rant), and I finally had money in my pocket.

Now, I got pretty much one of that.


Anyways, will complain about those things a bit more, but at a later time and probably more vociferously.

Despite shaving my head, my hair stubble keeps falling out – it’s kind of annoying.

Anyways, so tomorrow is round two of my chemotherapy and I have a better game plan in place. Got my diet ready (food is ridiculously important since the chemo last time wiped out virtually every bit of my blood [I exaggerate of course, I had some blood left, but it wasn’t enough to keep my body running well enough] and so a good diet from the beginning should go a long way (when I first did R-CHOP for what was then B-Cell Lymphoma [currently am doing ICE] I had terrible stomach upset, to the point that not eating was preferable…it didn’t help much, but mentally felt better at least – I thought I could head all that off by going with a simple diet that didn’t affect my stomach, it just kind of made things worse ’cause my body wasn’t getting the right nutrients and so I crashed two days later).

Anyways, food! Gotta have a good variety of protein a nice range of veggies (sweet potatoes are a godsend) and just not stress about it.

Reminds me, I should put up some recipes on this blog, even for those without cancer might enjoy them.

Finally Feeling It…

Yesterday started off alright, I was getting together materials that I need to start a fund-raising campaign, ’cause am seriously broke and this treatment is draining all of the cash my parents have and it is just weighing down on me.

But that’s for a different time.

So yeah, the day was going okay, but then a mundane moment led to my world falling away.

I took a shower.

As I shampooed my hair, it started coming out in clumps – that was a moment that I had to hold back on freaking out on. Sure I was experiencing hairfall, I was going to shave my head anyway, but seeing it come out in fist fulls…it got to me, it all hit me, I have cancer.

And the chemotherapy is kicking my ass.

I shaved my head (I think I did it badly, but really, just wanted to stop seeing it falling out in clumps).

Shaving my head the first time was me taking charge, getting ahead of what was coming. This time, with it striking first, for the first time I felt that I had cancer.

And I am utterly alone.

How much can I tell my friends, “hey holy shit do I feel like crap?” Either they won’t be able to give me the comfort I am looking for or they will stress over thinking about how to comfort me.

I don’t want to be more of a burden than I already am.

So yeah, I have cancer, and right now, my life is the shittiest thing I can think of that isn’t actual shit.

A Return to a Hated Status

It’s my first day back.

I was in the hospital for the past week, a combination of a 105f (about 40.5C) and virtually no immune system sent panic through the doctors and the parents as they tried to settle it all down.

It was a terrifying experience because the temperature had left my brain garbled, which normally would mean light-headedness and maybe some weakness, but all of that also meant for me is that my brain wasn’t able to give the right signals to my feet. Considering the massive amount of nerve damage from the beginning of the ordeal, not being able to walk again was distressing me more than I would like to admit.

I was found on the floor, collapsed ’cause my bedroom chair slipped and couldn’t hold me as I flailed to grab it before I hit the tiled floor. I was out of my mind confused trying to figure out where to put my legs and hands to try and at least crawl back to the bed and surrender to the confusion, like a drunken newly born deer.

I am back home now, the hospital was reluctant in letting me go, but I needed to come back home, to recharge the right way (the hospital is…fucking incompetent really, I can’t wait for robots to be in charge of my health), and to try and regain the strength that I had managed to achieve until now.

But until then, I find myself reluctantly grasping at the black rubber grip of my four-point cane, a stable anchor – and hated reminder that I seem to have gone backwards in my progress towards normalcy.