Three Years Later and I Still Got Cancer Sh*t To Deal With

Sorry about my extended absence. Despite having managed to complete my fourth cycle of ICE for the T-cell Lymphoma, I ended up being hospitalized afterwards due to shockingly low blood counts all across the board.

It was a struggle since my body did not want to trespond to any of the treatments (and I got plenty of transfusions – whole blood, platelets, fresh frozen plasma – still it didn’t take too well). A week later I finally was released and just been recovering at home…and been a butt about it.

But now that May is here and I am going in for my autologous stem cell transplant, decided I should blog a bit more earnestly about all of this.

So here we go, back on the blogging saddle again.

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Keeping that Brave Face

I got carried off that plane in a stretcher (eventually).

I remember trying to ignore the stares and whispers as I was trundled through the airport. It wasn’t embarrassing per se…it just felt so intrusive, they were commenting on my tragedy on my life (I like my privacy).

We had to rush through the airport, my sister was due back on the same plane that had brought us here (she just needed to accompany me on the flight…thankfully she came out to at least see my mom and dad who were waiting for me with the ambulance).

As soon as I saw my mom, I realized I couldn’t say anything. I couldn’t tell her I was afraid, that my world was falling apart, her eyes were already red as if she was holding back her own tears.

I was loaded up into the ambulance and whisked away to Aysha Memorial Hospital…my mom sitting silently next to me (though I could hear her trying not to wail).

That’s where my brave face came on…and I don’t think I have ever taken it off (I tried once, it did not go well…)

So I started to talk, I told my mom that things will be alright, and that it was nice that she got to talk to my sister, and just this and that, despite being so tired from stress and just general traveling (I am a terrible flier in the best of cases).

I dozed off, and the next time I was conscious, I was being hauled up a rickety elevator to the emergency ward of Aysha Memorial…

An Inglorious Return

Alright, so am laid up in the only sofa in my sister’s apartment and I spent eight hours watching the most efficient movers in the world pack away a house that I lived in for eight months.

Once the movers had left, my sister and her husband brought up an idea…since there was no way to take care of me easily (not only because of my seriously fat-ass, but also cause seriously it was difficult to do anything without any assistance…the rest of my life story will detail it more as time goes by), maybe I should fly back to Bangladesh.

I knew there was nothing else that could be done, I had no other contacts or friends or anything else in the country (I was working in Kuwait at that moment, did I mention that?), and my sister and her husband were leaving in about two week’s time (and there was no guarantee that I would be fixed up by then).

So yeah, we booked the first flight back to Bangladesh we could…there were some problems with getting everything ready, but I got to be carried down the narrow stairs by a combination of ambulance/fire fighters (I vowed to lose weight during that time…something I have been pretty successful in, though I need to get a bit fitter now, ’cause have let myself go during this recent round of chemo…starting today, I promise)….anyways, I have no idea how I got to the seat, ’cause it felt almost impossible to take that three feet walk from the airplane door to the seat (first row people! it was awesome [no, not really]).

That six hour flight (by the way, six hours is a goddamn long time, we need faster planes by now) was the longest six hours in my life (and seriously stressful as I tried to figure out where the hell was my life going and how did I get there).

The Blackest Night

So after an hour of frustrated struggling, I managed to get on to my bed. During that time, my mom had called me half a dozen times, so I called her back and calmly told me that I feel screwed.

I kind of wish I didn’t say that, I could hear her blanching at the idea of me being so sick and essentially unable to move, but I needed to say something to someone (I would tell my sister, but she had already done so much).

So I managed to settle into the bed, feeling a bit accomplished that maybe the day was not going to be so bad.

But, half an hour later, the guy who I was staying with came in and asked how I was doing…and then my sister and her husband followed right behind him, saying that I should stay with them so they could take care of me.

I groaned internally ’cause I was so exhausted just getting to the bed.

Anyways, I agreed, ’cause I did need help, and so back down the five flights of stairs, this time with everyone helping me to climb down.

It was more or less uneventful until I tried crossing the threshold, where my foot gave way and I fell. It was such a miserable situation trying to get back up, with us maneuvering me so that I could finally get some kind of leverage to climb into the car. It was terrible, and random people off the street saw us and tried helping me.

That was what I remember of that night, people trying to help.

I went to a different hospital (actually I went to the first hospital to try and see if I could get checked in so that professional nurses could take care of me, they wouldn’t let me because I wasn’t sick enough to warrant hospitalization…it was a very weird, frustrating conversation)…I think I went to my sister’s home, but I couldn’t climb up her set of stairs either, again collapsing onto the street as my legs couldn’t hold me.

That is another thing I remember, my legs never able to keep me up.

The other hospital was just as unhelpful, after the X-Rays and MRI (again), we just waited…and waited…and waited, no one could help me, no one knew how to help me, and we had no idea who to turn to to get some help.

Eventually, we went back home (it was difficult, I collapsed again, but the hospital staff joined together to help me up into a gurney.

As we tried to retire for the night, I decided to be an asshat one more time and collapse before being able to approach the stairs to my sister’s apartment. This time, we called the ambulance who called members of the fire-brigade to haul my fat ass (I was too heavy for just two of them to help me up the narrow staircase) up those stairs and onto the only sofa that was left in the house.

Finally, at 4 a.m., the day was over with…and my journey had really begun.

The Longest Day

Sorry about the long absence, I just finished my last chemo this past week (and couple that with my low blood counts means that I have been in the hospital for the past week or so).

Anyways, I kind of want to finish recapping the beginning of my long journey to my current state before the 20th, which will be my third anniversary of surviving what feels like hell.

So, last you left me, I was crumpled at the bottom of the stairs, unable to pick myself up because I can’t feel my legs. I call my sister (who I didn’t want to call because she was literally preparing to move countries, the movers were going to be at her place in less than 24 hours, she had things to do!).

But I was desperate and I was freaking out, and it’s something I needed to do.

So I called her, she came as quick as she can (which was thankfully pretty quick). I was seriously trying not to freak out as I told her I couldn’t feel my legs.

Then came our even more trying moment, trying to get my 150 kilo ass up and mobile so she could take me down the five flights of stairs (I had thankfully tumbled down only a short flight of stairs), into her car, and to the hospital.

It was an almost impossible journey, my legs would not bend, fold, push, pull, or do anything – I have no idea how she got me down those stairs and into her car (some days I feel like she should have abandoned me).

Anyways, go to the hospital, get an X-Ray and an MRI and get no results really. So I got some meds, went back to my apartment…somehow climbed those five flights of stairs back up to my place.

My sister left me at the door ’cause she had to rush (it’s cool, I was also feeling confident that I was getting better).

Boy was I wrong.

I managed to somehow get to my room, the furthest one in the entire apartment, thanks to using the walls as a crutch – but as soon as I closed the door to my room…my feet got tangled with each other, and there I fell, door closed, no one in the house, my phone somewhere in my bag.

And I still could not get up.

I cried for a little bit, screamed in frustration a little, and then started belly-crawling to my bed, hoping that I could use it to leverage myself up.

It took me a good half-hour to make it to the bed, that’s how difficult it was to crawl fifteen feet to the bed.  It took another half-hour to get on the bed, ’cause it was one of those damn fluffy soft ones that you sink into (I hated that damn thing), so it didn’t hold me up as I tried pushing down.

Finally, an hour later, I managed to get onto the bed, fully clothed, exhausted beyond belief…

The days was not over yet though…

Preparation by Proxy (Part 2)

Sorry for the delay between posts folks, whenever I have good days I kind of just enjoy myself, but now that I have a couple of days before I do my next round of chemo, it’s time to get some posts up, I know you all have been dying to read more of my thoughts.

So I previously talked about how my aunt had cancer and how she dealt with it basically prepared me for this pain in the ass problem (the nerve damage though was a bonus that I didn’t account for).

So my aunt was kind of a grump with the cancer (in retrospect, I feel like I was overly harsh towards her, though to be fair, I am considerably less grumpy than she is…but mainly because of how she was).

My aunt’s cancer was terrible, and it wore her down physically, and she was a person who always needed to work, so being weak and shackled with tiredness and all this pain in the ass stuff that comes with being a cancer patient must have been beyond torturous for her (I realize that now, back then, her constant complaining got a bit wearying after a while).

So when I finally got my diagnosis of cancer (it was a long and arduous diagnosis, will tell you about it one day), I strengthened my resolve…’cause no one needs to hear my whine and complain as I go through chemo. Instead I decided to face this problem like I faced a lot of things, with sheer “fuck-you-let’s-grin-and-bear-it” attitude.

It’s difficult and I can totally see not everyone able to do it. But if you can, go for it…it makes for talking so much easier. When you are the goofy one and laughing and showing things aren’t as bad as they seem (in fact it was terrible, I was stressed out all the time, but having people laughing at my general weirdness really helped…rather than them being worried all the time) your brain sometimes just goes with the flow and makes you think that it isn’t that bad either.

So yeah, I wanted to approach my cancer (and related troubles) in exactly the opposite way my aunt did…it’s why I do it head on and smiling all the time.

(I kind of wish I hadn’t run out of money though, but being unemployed for three years does that to you…)

Even now, gotta keep smiling, being goofy, and don’t let it get you down. That’s my advice.

Though if you need to cry, go for it too, crying feels good (but don’t cry all the time, you are going to get dehydrated).

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…